"You have a lot of well-meaning people in [Congress] but what moves this institution is the external pressure on it. You are the external pressure and you put a human face on it." —Rep. Rosa DeLauro's (CT) response to LE&RN Spokesperson Kathy Bates' live testimony on Capital Hill
Join this effort to move the lymphatic agenda forward in Congress. All United States residents, whether those living with a lymphatic disease or those who care about them can join this effort. In 200 words or less, tell Congress what impact lymphatic disease (lymphedema, lipedema, lymphatic malformations, etc.) has had on your life and what a cure would mean to you.
05/29/2020 - Veradale, Washington
My daughter, Amanda got lymphedema in both legs, from a cut that the emergency room didnt treat properly. It has caused such pain and huge play in her emotions, she is a wreck! This caused her to loose her job, state insurance barely helps, we the family has to help with my finances. She have been turned down for disability and I now barley can walk. We are begging for help!×
05/29/2020 - Egg Harbor, Wisconsin
My lymphedema began in Feb 1971 with swelling in my left foot. It took many years, many misdiagnoses and many trips to many doctors to be properly diagnosed. When it was finally diagnosed, the doctor told me "Well, the dice rolled and you got it." One vascular doctor told me I would never be able to bear children as the pressure would be too great; that if I became pregnant, my legs would have to be amputated so at the age of 25, I had an irreversible tubal ligation.
Now, 49 years later, the lymphedema has spread to both legs and up into my torso stretching almost to my rib cage.
It is my fervent hope and prayer that no other lymphedema sufferer would ever have to experience the things I have experienced. That with better educated and trained doctors, more dedicated lymphedema therapists, better awareness and better research, lymphedema (especially my primary lymphedema in which no one can tell me what causes it) would and could be cured. Thank you.
05/29/2020 - Blue Hill, Maine
Living and coping with lymphedema for the past 15 years has been an experience I'd prefer to have missed. Diagnosed with LE four months after surgery for breast cancer, with both arms swelling and extremely painful, I began thrice-weekly manual lymph drainage sessions. Even with the relief these treatments offered, I soon found that I could no longer lift or handle the boxes of music that were integral to my job in a music library. I also could no longer play or teach the piano because of the pain traveling through my arms and chest when I physically pushed the piano keys; I started piano at age 4 so this has been horrible for me. I was classified as permanently disabled and could no longer work. Now, 15 years later, I also can't shovel snow or lift my grandchildren or rake leaves -- or do any movements that involve some pressure or resistance, like washing windows. I still wear compression sleeves every day and have MLD treatments every month, and although my lymphedema symptoms are now more under control and tolerable than originally after my mastectomy, I continuously wish for a better, more permanent treatment or cure. And, at 72, my time is running out! Research is critical to easing the lives and bodies so compromised by this disease; mine is just one of them. Please help to make lymphedema research possible.×
05/29/2020 - Ballwin, Missouri
I accidentally fell while I was skiing, tore a leg muscle and got lymphedema from the lymph vessels not healing perfectly aligned. It's a lifetime disease.×
05/29/2020 - Bakersfield, California
I developed lymphedema as a result of having my lymph nodes removed after a surgical removal of a tumor. I have lymphedema in both legs. I struggle daily with pain and body image issues because of the way this disease has distorted my body. In an effort to maintain this disease, I am only alloted 2 pairs (per YEAR) of garments. One to wear, one to wash. Do we expect the same of people's underwear?? This is ridiculous. I pray for a cure but in the meantime, I pray people get what they need to maintain this condition. Maitenance of this disease will prevent hospital visits for cellulitis which will drive up medical costs. If left untreated, there is decreased mobility and functionality of the parts affected. I just want to live a normal and functional life as a contributing member of society. We need your help now!×
05/29/2020 - Valley, Nebraska
16 years ago this month, I was bitten by a brown recluse in the computer lab on my last day college. This day shaped my life in more ways than I could have ever expected. The venom had quickly traveled through my lymphatic system in my right leg and shut my lymph nodes down. My leg gradually began to swell and it continued to move up my leg. I spent weeks in and out of hospitals and Drs offices trying to figure out why. That’s when I met Dr Penn at UNMC. He told me I had developed Lymphedema. I had no idea what that meant along with most Drs and medical staff for that matter. Every day for 16 yrs I have had pain and discomfort given my right leg is about 50-60% larger in size than my “good” leg. I honestly thought it couldn’t get worse until I went in for my 33 week perinatal appt and found out my daughter had lymph fluid sitting on her lungs. I had an emergency C-section and they drained as much fluid as they could safely out of her tiny fragile body. I spent 2 long and emotionally draining months in the NICU by her side. Sophia fought so hard to push out the remaining fluid and I prayed to God it wouldn’t come back. She just turned one last month and thankfully has not shown any signs of it coming back. I now pray more than ever that my baby girl will not have to ever go through any of this. I would do anything to protect her from this. Please help us find a cure.×
05/29/2020 - Post Falls, Idaho
I had four back surgeries in 2016. The Lymphedema came on slowly. I am now unable to attend church, leaving the house is almost impossible due to the pain.×
05/29/2020 - Indio, California
I was 40 yrs old, undiagnosed for 5 yrs, Stage 3 BC 12 year Survivor. I saved my own life because I believed the diagnostics were incorrect in my diagnosis. Five mamms, 3 ultrasounds all NORMAL, until an ultrasound completed by a Radiologist at my request recorded the findings of Cancer. I had a lumpectomy and 18 lymph nodes removed in surgery 2008. I have suffered more from the Lymphedema and the cellulitis infections In my arm, than I ever did from chemotherapy . I am only 52, and it has been a blessing to be alive and see all the miracles and milestones with my beautiful family. However, the physical setbacks, fevers, infections and value of life has been severely challenging for the entire 12 yrs. Four of the 18 lymph-nodes were positive for cancer, and yet, 14 healthy lymph nodes were surgically removed because my surgeon knew best. This is my journey!×
05/29/2020 - Rural Hall, North Carolina
I am not from one of the states on the list but would like to submit my story. I have had lymphedema for 20+ years and have been hospitalized with severe cellulitis numerous times as a result. I have severe scars from massive blistering that could have been prevented had doctors known what to do with me! Instead, I was sent home while still suffering from major infection and needing IV antibiotics. Doctors rarely know what to do with this disorder. I have basically had to learn enough on my own to tell them how to treat me! Compression garments help my leg swelling minimally. Any tiny scratch can lead to cellulitis, which for me causes dangerously high fever, extreme pain, nausea, vomiting and leg ulcers. Lymphedema is common but the medical community remains clueless about any potential cure. I was given diuretics by more than one doctor, and water retention is NOT the problem! There is much work to be done to find a cure and better treatments for lymphedema. It affects both those who have had breast cancer and people like me, who acquired lymphedema after working in a sedentary job for too many years. Please pay attention.×
05/29/2020 - Renton, Washington
I have advanced Lymphedema (LE) that went undiagnosed and untreated for at least 25 years. Sadly, that’s very typical, as most doctors know almost nothing about this condition. Because it was untreated, the LE has spread all over my body. I’ve been in hospitals and nursing homes for 6 years now. All of this could have been prevented had my doctors known more about LE.×
05/29/2020 - Portland, Oregon
I was 25 when my left leg lymphedema presented itself and changed my life forever. I had just moved to NYC by myself to pursue a career in the fashion industry. It took me years to find doctors who could explain lymphedema to me, and years more before I could fully understand, accept and confront this challenging condition. Since then, I have had 3 surgeries and 1 major cellulitis infection, and have felt the toll of my left leg lymphedema both physically and mentally every day. I've had to fight for my rights against insurance companies and medical facilities that don't understand what lymphedema is or how to treat it. It is simply not right that lymphedema is so under-recognized by the medical community and that treatments and support are not covered by insurance companies. I'll never give up and will continue to fight for us to get the recognition and treatment we deserve. Lymphies unite!×
05/29/2020 - Wantage, New Jersey
I developed secondary lymphedema in my left leg 12 years after having 29 lymph nodes removed during a total
Hysterectomy due to cervical cancer at the age of 31 just after my second daughter was born. Nobody ever mentioned or discussed the possibility of lymphedema happening back then and it took years to get a diagnosis. This disease needs more advocates and more coverage! There are not enough healthcare providers and the compression garments and treatment options are antiquated!
05/29/2020 - Detroit, MI, Michigan
I had breast Cancer surgery in August 2012. I was diagnosed with Lymphedema in 2013. My Insurrance company denied my request for a pump requested my my Lymphedema therapist. My left arm is almost twice the size of the right one. I suffer each day, and cannot get any treatment. I’ve had physical therapy for it, wear the sleeve. Nothing helps. No one seems to care or take Lymphedema serious.×
05/29/2020 - Bellmawr, New Jersey
When I had cancer surgery (uterine cancer), I had no warning that the removal of 15 lymph nodes would lead to lymphedema. In 2008 I noticed my left leg was starting to swell. I was not given precautions to protect myself from developing this horrible condition. I now live with a leg that is twice the size of the other, causing me pain, depression and embarrassment, not to mention problems in buy trousers and shoes.×
05/28/2020 - Jenison, Michigan
Finishing my surgery, radiation and chemotherapy for uterine cancer, I thought the worst was over. I was wrong. Five months later, I looked down at my grossly swollen leg, beginning the challenge of my life coping with lymphedema. Management involves 2-3 hours a day, robbing me of 100% of ‘free time’, especially when I struggled to remain employed. Leg heaviness makes it difficult to walk. The 23 hour-per-day need to wear compression (bandages or tight custom-made garments costing $5000+ per year) makes my joints stiff and painful. I know if I let up in this care, my future is a nursing home.
I have found zero physicians in Michigan treating this disease, scant medical research, and inadequate funding. There is a desperate need to train more providers to treat lymphedema. Requiring insurance coverage of supplies/services is vital to avoid progressive deterioration resulting in even more expense to the individual, family and society, in addition to the waste in human potential. Most importantly, research is need to prevent and cure this common, chronic and neglected disease. I would love to return to being a highly productive person again, rather than spending so much of my life on coping with lymphedema.
05/28/2020 - Ridgefield, Connecticut
Drew, our second daughter turned 3 on March 9th. She was born with a swollen left foot without any answers. It soon was obvious to us that she was swollen on her left side from her waist down. No one knew where to send us. This was extremely frustrating, anxiety producing, exhausting, and worrisome. We continued to take her for testing, looking for answers, but nothing was confirmed. After a year plus of routine follow-ups, ultrasounds, and blood work, the definitive diagnosis was made in July 2018. We are so thankful to finally have a diagnosis, Primary Lymphedema. This means she has a congenital disorder causing a malformation in the lymphatic drainage system specific to this area of her body only. Instead of the body circulating and filtering lymph fluid throughout the body, the lymph fluid in this area collects in the subcutaneous tissues causing swelling.
The challenge now is learning how to help Drew live with this chronic progressive disease. There are no treatments, just preventative measures. She wears a compression stocking during the day, and a nighttime garment at night to help control the swelling. Our family is getting involved to share Drew's story in order to raise awareness, help other families without direction, and find a cure. She is an amazing young girl with a huge personality, and at a young age already an advocate for this disease.
05/27/2020 - Lake Oswego, Oregon
I'm not sure how I got lymphedema. It started at 13. Before that, I had healthy feet and legs that allowed me to start on the varsity tennis team early. But once my legs and feet began to swell and hurt, my athletics came to a grinding halt. It wasn't until I was 25 that I got an actual diagnoses and some treatment ideas, such as compression socks. Before that, I suffered for more than a decade with pain and debilitating swelling. Even now, at 44, I still have all the same problems and very few helpful treatment options. And as I get older, it gets worse. It's impacted my quality of life in every way, from feeling "deformed," to having limited mobility and pain. I'd love for treatment options to advance and be covered by insurance! It's a real disease, and yet so few understand it, including the medical community!×
05/26/2020 - Arlington, Texas
I’m 61, was diagnosed in 2014 with stage 3 inflammatory breast cancer, that has now metastasized to my right hip bone, making it now stage 4 cancer. To attempt to get rid of it, I had 2 unsuccessful lumpectomies, then a right mastectomy, Chemo and radiation, then it spread to my left lymph nodes a year later so I had a left mastectomy, more chemo, and radiation. I feel very lucky to still be alive in 2020. Now, if only a magic pill could be discovered to reduce the lymphedema in my right arm that spreads to my shoulder and neck and sometimes left arm too. Even morphine can’t ease the pain of lymphedema when it flares into deadly cellulitis from time to time, requiring antibiotics and steroids that have consequences as well. Please please address lymphedema to find a cure... or at the very least cover therapy and methods to somewhat relieve it and prevent deadly cellulitis it can lead to! (Thank you to Kathy Bates for turning a negative lymphedema experience into such a positive hope for so many of us struggling and suffering in silence with this!)×
05/26/2020 - RIVERHEAD, New York
My name is Nicholas, I am nine years and I’ve had lymphedema all my life. When I was a baby my mom and dad saw swelling in my body and took me to the hospital. I was there for a week. My mom says the doctors did so many tests and still didn’t know what was wrong with me and I was super sick. It tuned out I had “lymphangeictasia” in my stomach and some issues with my “lymph system”. (I know.. is that even a word! I still don’t understand what those words really mean.) My mom said it was so scary but my doctor, Dr W, was the best. He never gave up on me my mom said.
Until I was eight I had lymphedema in only my right leg. Last year my other leg really swelled up and it hurt so much. Now I have lymphedema in both legs and the doctors don’t really know why. That’s why I want doctors to do more research because there could be a potential to find a cure. It would mean a lot to me if they found a cure. The socks that I wear on my legs all the time are very uncomfortable at times (and “crazy expensive” my dad says) and I have to be careful not to get hurt. I love to play soccer so you can see my dilemma.
05/26/2020 - Fort Worth, Texas
Surviving non-Hodgkin's lymphoma twice has come at a price. Chemo & surgery to remove lymph nodes for biopsy have permanently damaged my entire lymphatic system. My new 24/7 job is managing lymphedema. Doctors, lawmakers, and insurance companies need to know how REAL and devastating LE is!×
05/22/2020 - Los Angeles, California
I developed lymphedema in my right leg almost two years after surgery for ovarian cancer. I wasn't warned of it, nor was it taken seriously by my surgeon. I did my own research and insisted on seeing a lymph PT who confirmed it. I'd love to find the "gold standard" of CDT, but it's cost prohibitive even with excellent insurance. So I keep my lymphedema "managed" like a part-time job: exercising, wearing compression, bandaging, pumping, massaging, every day, over and over again, just to keep it from progressing. My world, my life, has become much smaller. The heaviness in my leg has become an overall emotional heaviness. A cure -- or even appropriate treatment -- would bring back joy and hope and possibility. Please, please, take this condition seriously. The medical community should be as educated as every patient has to be in order to endure. And lymphies shouldn't have to suffer from lack of treatment in the wealthiest nation.×
05/22/2020 - Torrance, California
Every person suffering from lymphedema or lipedema deserves the opportunity to regain physical mobility and health. More funding for timely treatment, training and care is essential.
Lymphatic diseases are difficult and unique disorders that can be medically treated with proper early diagnosis, therapies and surgical intervention to stop the pain and suffering that I've seen so many patients have to experience.
I implore you to support and fight alongside our lymphedema and lipedema warriors.
05/19/2020 - Torrance, California
It all started when I was entering puberty. I noticed that my legs were developing a lot of what I thought was cellulite. As the years went by my upper body always seemed normal size but my hips and legs were widening and becoming heavy. I was very active and didn't understand why I was fat. When I became a mother it got worse. I decided to talk to my primary doctor and she diagnosed me with lipedema at the age of 28. She said it was a rare fat disease. All those years of crying and not understanding why my legs were so big and painful all made sense. I want insurances to understand that we need help and that surgeries and garments are a necessity for a better life to treat this debilitating disease. My mother has this condition as well and she has lost a lot of her mobility at the young age of 53. So please congress help us! Thank you.×
05/19/2020 - Brentwood, Tennessee
I’m 56 and was born with lymphatic problems. My LE showed up in my left leg about 13 years ago. I went a short while without being diagnosed, finally after being rehearsed from a hospital stay due to cellulitis my neighbor worked for a hose company and suggested I had LE. I I spent the first few years wearing hoses and getting treatment about once a year (it was too expensive). I then started wrapping from ‘toetohip’ for about 6 years, 5 days a week, only to try to maintain my swelling. I finally found Dr Granzow and was fortunate to go see him. After over a year of fighting insurance and spending thousands of dollars just to try to get treatment - I finally got approved for surgery. My bill was over $400,000!!! I’m forever grateful for getting to where I am but it should not be this hard!!×
05/19/2020 - Pomona, California
I have tried endless dieting , even gastric sleeve . I have lost 70 lbs and yet my legs and arms look the same , while I cannot grab an inch of fat of my waist. I'm devastated that my legs will never look "normal" and now approaching 50 years old , my struggles have been since puberty. The dream of nice legs is gone forever, please , please , realize that this is a real battle .....I felt that once I lost the weight , magically my legs would look normal. I am defeated, embarrassed and hopeless...lipedemia, lipodemia , is REAL!×
05/19/2020 - Catawba, North Carolina
Although I do not have lymphedema, I have had lymph nodes removed which makes me at risk for developing the disease. It is so disheartening to know that if I were to develop it, there is NO CURE! With proper research and funding, I feel certain that there is a cure to be found.×
05/18/2020 - Lynnwood, Washington
It all began after age 70! It's bicycling related, more's the pity. After one ride of 35 miles, I noticed fairly severe swelling in my groin area, which interfered with urination. That has happened every time since after biking. I had no idea what the problem was!! People laughed at the idea of a fat groin, and I did too! My physicians didn't have a clue. Because I moved to Seattle in 2017, I haven't been biking as frequently so it hasn't been as much of an issue. But now? I want to bike more but I also want a better aftermath!! I need the exercise. Fortunately, I have an injury massage therapist, who helps. I also will try a compression garment specific for bicycling as well as lowering my saddle an inch. Stay tuned. I'd like to turn in a success story!×
05/15/2020 - Oak Island, North Carolina
As a Lymphatic Drainage Therapist I regularly meet new clients who are dealing with lymphedema, mostly secondary - having come on after cancer treatment. Often these clients have never been educated or "warned" of the possibility of developing lymphedema, so they fail to get treatment early because they don't know what it is.
Recently my own mother developed stage 2 lymphedema following uterine cancer treatment. The sad thing is that it went on for four months before we were able to get her treatment. Four different doctors were told of her swollen leg and they did nothing. Now it's bilateral, stage 2 and extremely uncomfortable. If the medical teams providing her surgery and radiation would have educated her on what to watch for, this could be completely under control. That would mean comfort for her and fewer medical bills for the insurance company. Speaking of which, she now (amidst all the medical bills) has to pay hundreds of dollars to purchase compression garments because medicare won't pay for them! Please do something to change the medicare coding, and please do something to promote more lymphedema education to doctors, nurses and the general public.
05/14/2020 - Philadelphia, Pennsylvania
I was diagnosed with lymphedema when I was fourteen years old. I came home from school one day, and my thigh was significantly more swollen than my left thigh. I was an angry teenager who didn’t want to believe I had injured lymphatics, so I refused to wear compression. All through my teenage years, no one was able to tell me whether or not I had primary or secondary lymphedema. I always thought I had secondary because I was born with normal legs. It’s been a never ending journey - trying to find answers. It wasn’t until my twenties, that I decided to just give up on trying to figure out why I have this, but rather, take care of it. I have had two liver transplants, and I struggle with chronic infection. Needless to say, my lymphatics have taken the front seat in regards to my chronic illness. I have carried around so much shame for ten years of my life because I felt like I was deformed. As soon as I was diagnosed, I threw out dresses and shorts. It’s a burden that I carry everyday. I wear compression stockings everyday now, and I have a lymphatic pump, yet it’s still not enough. I walk around with the reality that there are no clear answers as to why I have this, and that there is no cure. It affects the way I feel everyday, it affects my mind, and my overall quality of life. Please help people like me.×
05/14/2020 - Johnson City, Tennessee
My name is Jennifer Foster, I have lymphedema in both legs and feet. I was diagnosed in 2009 by Dr. Rebekah Cote. I have had lymphedema however since 1998 from a car accident. The front seat crushed my left leg and I had to have two surgeries and a skin graft. After that my left leg continued to swell, so much it was hard to even walk. The doctors I was seeing then told me to get checked for diabetes, at the time I did not have. They could not figure out why my leg was swelling, so I just dealt with it until I could no longer work standing up and went to work at a call center where I could sit. I finally got insurance through my work and went to see Dr. Cote who immediately told me I had lymphedema and got me started with physical therapy and MLD at Blue Ridge Physical Therapy in Johnson City, TN. I was scared to death but they made me feel comfortable and I've been going there since. The only thing is now I'm disabled and my insurance (Medicare) only covers 80% of my therapy and nothing else. I can't afford the 20% and since I no longer have Medicaid, that paid 100% I can't go to physical therapy for my MLD, wrapping and afford my wraps and garments to keep it under control so I can have any kind of life outside my home. The covered the compression pump but without the wraps, garments MLD, and physical therapy, there's no point in the pumps.×
05/14/2020 - Los Angeles, California
37 years ago, when I was 13, my mother died from lung & brain cancer. This loss led me to a path of healing. My entire professional life I’ve studied the lymphatic system and it’s effect on disease. As a Lymphedema Therapist, I’ve worked with thousands of people who have Lymphedema, or are at risk of developing it. The work is both rewarding and FRUSTRATING! The treatment is akin to placing a band-aid on a proliferating inflammatory condition - the tools therapists are given to help their clients are archaic and insufficient- and not unilaterally covered by all insurance plans!
My clients are often told by doctors that they can’t find what’s wrong with them. Surgeons don’t inform them of the risks prior to treatment for which there’s no cure! There are more warnings on Tylenol bottles and yet we still have to lobby Congress for funding for education & awareness!
It’s time to SHINE THE LIGHT ON THE PLIGHT OF LYMPHATIC DISEASE AND DYSFUNCTION. If we can cure AIDS, we can cure Lymphedema!
If you or your loved one faced a Cancer diagnosis and the treatment led to a disfiguring disease- I know you would become our biggest ally.
Please don’t wait for this disease to hit your own family- act now - save lives - fund the cure- and be a hero!
Lymphatic Health = Immune Health
05/14/2020 - Alpine, CA, California
Hi, my name is Kristin! When I was 24 years old I was diagnosed with stage 3 melanoma.. I underwent two major surgeries to remove all cancerous lymph nodes, as well as a year of bio-therapy treatment.. This left me with stage 2 Lymphedima.. Funding for this lifelong disease would greatly help my family in treating an maintaining my Lymphedema!
Between my lymphedema therapist, my lymphedema machine, my compression garments and all of the other expenses that goes with this awful disease, it gets so expensive for my family and we struggle with all of the financial Burden! We have paid everything out of pocket and it has cost our family well over $25,000.. Please make this right so that insurance covers what we need, for this lifelong disease!
05/13/2020 - San Diego, California
Facing life and death uterine cancer was rough! But having to live with debilitating lymphedema for the rest of my life is unthinkable! It’s like playing a chess game, where whatever move you make throughout the day, you are constantly thinking how does it affect the limbs? Continuously fighting with insurance companies, going to MLD appointments, using pumps, garments, night garments, bandaging, infections, cellulitis. Emotionally and physically- it’s an exhausting existence! Yes, I am alive! But where is the quality? So I ask you Congress-HELP!×
05/13/2020 - Coronado, California
My wife was diagnosed with cancer in 2011. After surgery, chemo, and radiation and treatments In 2012, we found that my wife had lymphedema. We discovered this disease by googling trying to find out one of her legs was swollen and retaining fluid. My wife is a survivor, and I thank God she is. It has changed our way of life, from exercise, diet, and physical activities. Insurance companies do not recognize this (for the most part) as a life threatening disease. There are tens of thousands that are affected with lymphedema. It amazes me how dangerous it is, and so poorly we seem to care about it. We need to focus on the problem, acknowledge it, and make it a national cause to provide the very best care and treatment for people like my wife, and all of those affected. If you take the time to learn about this disease, the more you will understand how help and funding is needed. You have a great opportunity to provide funding for those affected, training, and care givers. Please listen and help.×
05/13/2020 - Flagstaff, Arizona
From very young I was told I was "meaty". Kids made fun of my big arms and I thought I was muscular. Even though I was outside riding my bike and swimming, I couldn't lose weight. I began dieting at 12! I began menstruating at 9 and had terrible painful periods. I struggled through, never gave up and after college, I was a Principal at 26! I was brave, confident and achievement oriented. I was even a body builder in my 20's! At 30 the weight began being out of control. I changed tried every diet, even starvation! I'd lose 15 or 20 pounds and gain that back and more. My self-esteem plumeted and as my body grew, so did the fatigue and pain. Periods were the worst! At 42 the cysts were so large I had to have a hysterectomy and gained 80 pounds! I went
on a prescription diet and lost 100 pounds eating 800 calories a day, swimming laps 3 hours a week and riding my bike 7 miles 3x a week. Sadly, once I added food back, I gained back 60 pounds! My self-esteem was gone. The accomplished woman I had been in my youth was gone. I could barely walk from DDD and hip problems. I couldn't sleep due to pain. I was told to lose weight and eat well when I barely ate! I learned I had lipedema! I bought a swim spa and had liposuction paid by inheritance. Now I eat very little (low carb), fast, and burn 3500 calories a week in the pool. My life is only about this disease at 62. But no more pain.
05/13/2020 - Grand Island, NE, Nebraska
I am submitting a story for my daughter, as she doesn't have computer. She has had severe lymphedema especially in her legs, but now progressing to other parts of her body. She would be so thankful if they could find a cure for her lymphedema or at least a medication that would help it. It seems to me that it is a disease that most doctors don't know much about. It is a very debilitating disease and there doesn't seem to be much except compression, physical therapy, etc. to help it. I urge Congress to study this disease more and to pass legislation for some kind of help for the women who suffer from it. Thanks, Mrs. LaVila Brannagan, Grand Island, Ne.×
05/13/2020 - Palo Alto, California
Finally six months ago I got diagnosed with Primary Lymphadema after getting pushed around for years. It's a extremely limiting disease and the available therapy options are time consuming and limited. Being a person under 30 development in this area would be life changing.×
05/13/2020 - Sacramento, California
Lymphedema is a serious chronic disease that plagues nearly 10 million Americans who are either born with the condition or who develop it as a result of trauma, surgical insult, radiation therapy, or a combination of these factors.
In fact, the National Cancer Institute predicts a 42% increase in cancer survivors 65 years of age or older by 2020, and as many as 1.5 to 3 million Medicare beneficiaries who are cancer survivors will require treatment for their lymphedema.
Timely diagnosis and treatment are often not available to patients, particularly those in rural areas, making lymphedema more difficult to manage with more negative health consequences due to delays in diagnosing and treating the condition.
05/11/2020 - Branford, CT, Connecticut
My daughter was diagnosed with primary lymphedema at age 11. Her doctors said there was no treatment, and it might get worse. She saw her doctor every year, but they did nothing to help her. At 23 she became pro active to find an occupational therapist who specialized in lymphedema. The treatment helped, but if she had been treated from the beginning her results would have been much better. Instead, she now has irreversible, Stage 2 lymphedema and has physical pain and discomfort. It was not easy as a teen to wear compression socks.
Her lymphedema seems stable now, but she is only 32 years old. I worry about her health and mobility in the future, not to mention the cost of compression garments, pumps, and night time garments that she needs to manage the swelling. A cure would give us hope for a healthy future and ease the anxiety of dealing and arguing with insurance companies. A cure would also decrease the worry about the possibility of her passing this on to her children.
05/11/2020 - Massapequa Park, NY, New York
My daughter was diagnosed with lymphedema at the age of 28 and sought treatment at a facility specializing in treatment of this disease. These centers are few and far between. Facility has now closed (reason unknown) and we are looking for another physician specializing in this area. I am a registered nurse and very concerned about lack of resources available. Thankfully my daughter, now age 40, is a responsible adult and does everything she was taught to keep it under control. We do not know what the future holds. There are many others who have not had the benefit of the education she received. I have seen first hand what lymphedema does from my days working in hospitals. It can be terrifying. We need funds for education, treatment and research. Insurance companies need to expand coverage for needed supplies. The money spent would probably offset money spent used to treat related psychological issues and, I suspect, lead to less unemployment benefits paid to people who are unable to work.
Marianne DeAngelo, RN
05/11/2020 - Concord, California
My 4 year old great grandson has experienced lymphedema since birth causing swollen hands, feet and legs necessitating the constant wearing of compression clothing to minimize swelling and form some protection from injury and infection to the swollen areas. Research funding for treatment and hopefully a cure would benefit the many needing relief from this illness. I hope congress will give a top priority for this.×
05/11/2020 - Clayton, CA, California
One of the greatest and scariest days of our lives was August 16,2016. The day my Grandson Grayson was born. You see, he is our first (and only) grandchild and we were ecstatic on the day he was arriving!
His birth was a bit difficult for his mom so it turned out that he would come via c-section as he was presumed to be a VERY BIG boy. He was, but unfortunately it was not because he was pudgy baby heavy, it was because he was BORN with Lymphedema! Why?? NO one knows!! Our little man now has a condition that will affect him the rest of his life and as of now there are no "cures", no "treatment's" and very little in the way of research being done. PLEASE, PLEASE help our adorable Grayson to have the best life he can by giving more funding to find a way to help him and so many others in this situation.
05/11/2020 - Columbia, Missouri
I thought lymphedema was a disease for unfortunate Africans bitten by mosquitos, until I developed it in both legs after pelvic lymph nodes were removed due to uterine cancer. I thought celiac was a disease that only affected sickly starving children, until I was diagnosed with it at age 53. I thought I was fat and lazy, even though I was continually dieting and exercising, until I discovered I had Lipedema and Hashimoto’s disease. All of these diagnoses happened to me within a few months in 2014, and suddenly my world was completely affected — from the food I ate, to the clothes and shoes I wore, (which now included the awful, ugly, thick black compression hose from waist down to my toes), even to the chairs in which I sat — all were changed as a consequence of my body turning against itself with these incurable progressive autoimmune disorders. I could not be more shocked at the reprehensible lack of knowledge of my oncologist and family medicine practitioner about the above-mentioned diseases and disorders. I have had to educate myself completely, as well as advocate for any treatment. This needs to change! FIND the CURE!×
05/11/2020 - Wyoming, Michigan
I was diagnosed with lower extremity lymphedema after treatment for cancer when I was 30, almost 18 years ago. In the past 18 years I’ve had to give up my career, I’ve lost friends, struggled with pain, discomfort, body disfiguration & dysmorphia, depression, exhaustion, and I have suffered tremendous financial burden because none of my compression garments are covered by insurance. Lymphedema is a nightmare and it ruins lives. We need help and we need it now, please.×
05/11/2020 - Fort Ann, New York
I have limphedima myself for the last 5 years after being diagnosed there was very minimal help or research done in this terrible disease! I have had cellulitis multiple times my legs are hard to heal and the drs or wound care don’t know how to treat most of the time it’s try this or try that I have compression and pumps to help me and will soon start therapy again please I’m begging for more research to be done to help all of us who suffer from this something has to be done!×
05/11/2020 - Chipley, Florida
I was misdiagnosed for 7 years.
I finally found a vein specialist that immediately diagnosed me 2 years ago.
This is incurable, but manageable disease.
This is also very expensive, I have to pay for my compression out of pocket while on disability.
I am limited to what I can do mobility wise.
Anything that can be done to have medicare pick up the costs would be helpful.
05/11/2020 - Surprise, Arizona
I was diagnosed with lipedema in May 2019, I also have lymphedema, so I actually have lipolymphedema. These diseases cause me daily pain & they have limited my mobility quite a bit over the last 10 years. Unfortunately there is not much knowledge, even among the medical community about lipedema. It's very hard to get diagnosed & to get the care you need. Our conditions aren't covered by insurance. These are lifelong diseases that affect our quality of life. We need education, awareness, understanding & insurance coverage.
05/11/2020 - Cedar Rapids, IA, Iowa
When I was 50 my legs started filling with fluid. I was sent to several specialist and ran thru many test to try and figure out why. I was finally sent to Dr. Wei Chen who informed me I have lipedema which was causing my lymphedema. He told me I have probably had lipedema my entire life. I have struggled with my weight since I was little. My self esteem was always low because i thought i was a weak person because i was always over weight. I think if dr.s were more aware of this condition I wouldn't have struggled so much my entire life with dieting and hating myself. I am still finding other issues I have that relate to this. Many symptoms that dr.s just blew off because they didn't understand it was a lipedema symptom. One of those symptoms is pain and with my weight going up due to the lipedema my pain is also going up. If liposuction was allowed thru insurance, I could have less pain and a better quality of life. Also now that I know what diseases I am dealing with, I could better manage any returning lipedema and slow future progress.×
05/11/2020 - Elizabeth, New Jersey
All of my now chronic pain issues were non -existent prior to the Hysterectomy I had in 2002. Among them was Lipedema; was not diagnosed until 2015. After years of suffering with very painful swollen ankles, and legs the real battle started with trying to get treatment. The initial wrap therapy, (which I had to ask for, and only knew about from friends who had relatives with the same condition), works very well, but the wrap is removed, the swelling returns. For ongoing treatment you need to wear compression garments, which includes socks, and various undergarments. The coverage for therapy is limited, and the supplies are not covered at all. I am retired early because of this condition. I am Senior on a very limited income. I am still wearing the same special order socks from therapy of three years ago. I still suffer wit the painful swelling, and I cannot afford massages, or other at home exercise equipment (vibration plate,etc.)×
05/11/2020 - Jackson, Tennessee
I've had Lipedema at least since puberty, but was only Diagnosed when I turned 50. How is it possible to be ignored for that long?
Lipedema is a lymphatic disorder where the lymph fluid that can't move out in between cells becomes fibrotic fat tissue. This disease effects approximately 11% of all women.
I typically spend 17-20 hours a day in bed, in order to keep my legs elevated, and my time out of bed is spent trying to maintain my health. Having my legs elevated in bed is a benefit for Lipedema so that the lymph doesn't need to fight gravity.
It's been a blessing that I was able to create a job for myself at home... so that I can just "sit up" in bed and be at work.... But, that also is an indication of how I've been able to hide my symptoms too. Bad day? Well, don't get out of bed/ don’t take a shower/ don't get dressed... just put on a good voice and answer the phone... and when it's REALLY bad - don't answer the phone at all -- send an email when the issue is "fixed"..... But even the shorter hours are placing a strain on me.
One of my favorite parts of my work life was meeting with customers/ suppliers, and I used to dress as a professional. Since I am limited with my ability to travel, carry items or eat out with them, this part of my work life is forever behind me.
I have a difficult time giving up. This is why I need to share my story with you!
05/11/2020 - Saratoga Springs, New York
I was diagnosed in 2007 with primary Lipedema, and because it took so long to get properly diagnosed, I also have secondary Lymphedema. They call my stage Lipolymphedema. It is a chronic and progressive condition over most of my body, and I fight every day to maintain my mobility, which this conditions tries its hardest to take from me.
It is estimated that over 10% of the female population has Lipedema, but yet most go undiagnosed, even 80 years after the first case was diagnosed at the Mayo Clinic. Instead we are fat shamed, made to feel it is our lifestyle, and we get told we need gastric bypass surgery.
The sad truth is that gastric bypass would only work on the regular fat, but even it cannot improve the Lipedema tissue.
We stay as active as possible, not in the hopes of losing weight, like someone without our condition would expect. But in the hopes we can maintain our mobility. But it is a continual fight that later stages are losing more and more.
We need research, we need treatments that work, not just self care treatments to manage the symptoms, but real treatments to stop the progression, and hopefully one day find a cure.
We spread awareness as much as possible, so others can get diagnosed sooner and not share in the later stages of this debilitating condition.
Thank you for listening, and hopefully helping with funding for much needed research.
05/08/2020 - Coronado, California
My dear friend was diagnosed with lymphedema shortly after battling cervical cancer. I am shocked to learn what little research is done on lymphatic disease. Much less taught to our Doctors and Nurses in their education process. Education of this important cause is key. Please fund research for a cure to lymphatic disease.×
05/08/2020 - Lafayette, California
My nephew was born with Lymphedema almost 4 years ago. He is an amazing kid and so full of life and fun. His lymphedema primarily presents in his feet, legs, and hands. He requires special shoes to be made since nothing on the market will fit his severely swollen and rounded feet. He also has to wear compression pants and gloves. It's not only difficult finding compression garments that help alleviate the symptoms, it's also very uncomfortable for him in the heat. Can you imagine wearing compression pants and gloves on a hot summer day? The risk of infection without the garments is also very worrisome. A cure for this disease would bring comfort and quality of life to so many who suffer from it. And for our boy, we would love better treatments and optimally for a cure to be found so he can be his energetic, fun, witty self without the worry that comes with this disease.×
05/08/2020 - Guilford, Connecticut
I have watched my sister suffer with Lymphedema for much of her life. When she was diagnosed, approximately 20 years ago, there were very few resources to help her cope and treat this ailment. As a result, her condition worsened over time and has negatively impacted her physically, emotionally and financially. Increased funding and awareness will help people with this debilitating problem find relief and hopefully protect future generations from suffering needlessly.×
05/08/2020 - North Branford, Connecticut
I met my best friend when we were six years old. About five years later, she was diagnosed with Lymphadema and it was scary for me as a kid to see my best friend go through that knowing there was no treatment available for her. Despite being a healthy, active young person who saw her primary care doctor each year, she didn't get the treatment she needed until we were in our early twenties after she tirelessly researched and found an occupational therapist who specialized in Lymphadema. Now in our early thirties, she has irreversible Stage 2 Lymphadema. I worry about her health and mobility as we get older. I wish treatment had been made available for her when we were kids. We both had babies this year which has been such a blessing and so much fun for us. We have been best friends for 26 years and with a cure, I can rest assured we will life a long and fulfilling life together watching our kids grow up.×
05/08/2020 - Milford, Connecticut
My niece was diagnosed at age 11. She didn't receive helpful medical care until she was in her twenties and did her own research. She began seeing an occupational therapist who specialized in lymphedema. The treatment helped, but who knows how much better she could be if she received this help when she was younger. She worries about the future, how disease will progress, cost of compression stockings, pumps and nighttime garments she uses and if her son and future children wi inherit the disease. A cure needs to be found.×
05/08/2020 - Castro Valley, California
Our great nephew Grayson was unexpectedly born with lymphedema three years ago. As any new parents do, my nephew and niece sought information, but not about feeding times, best toys, and sleep schedules. They needed to learn about lymphedema, so that they could raise Grayson with as few limitations as possible. This little guy is limitless in smiles, curiosity, intellect, and personality! However, he is limited physically by the compression suit and gloves he wears every day. He will have health limitations. He will have some activity restrictions. That is why funding research is so important for him and for others who seek answers to overcome limitations. Please fund research for the Lymphatic Education and Resource Network. It is important for families like ours seeking answers and seeking an informed future for our loved ones like Grayson.×
05/07/2020 - San Diego, California
It is frustrating to me as a Lymphedema therapist that this curable disease is so under treated. We need more insurance coverage for garments and ICG imaging and lymphatic microsurgery and supermicrosurgery.×
05/06/2020 - Baltimore, Maryland
My name is Michael P. and I am 10 years old. At the age of 6 years old, I was diagnosed with Kaposiform Lymphangiomatosis. It is a really big word so I just say KLA. It is also very rare but it effects kids like me at my age. It can make me really tired and I have to be careful when I play because I bruise a lot. The doctors and scientists do not have a cure yet but with me telling my story and sharing what I have been through with others - I really hope that the experts will work together, get lots of funding and research dollars to help me and kids just like me. Please know that we are all #bettertogether and that we need to put #puthopeintoaction.
Here is my story by video. The doctors called it "The Power of One"
Hope you like it.
05/06/2020 - Oakland, California
I was diagnosed with primary lymphedema at age 11. My doctors said there was no treatment, and it might get worse. I grew up in a town 15 minutes from Yale. I didn't receive treatment until I was 23 years old when I did my own research to find an occupational therapist who specialized in lymphedema. The treatment helped, but if it had been treated and managed from the onset, my life and left leg would have been much different. Instead, I endured physical pain and discomfort, as well as social stigma during my adolescence. My lymphedema is under control now, but I am only 32 years old. I worry about my health and mobility in the future. I worry about the cost of compression garments, pumps, and night time garments that I need to manage my swelling. A cure would give me hope for a healthy future and ease my anxiety about cost of equipment and arguing with insurance companies. A cure would also decrease my worry about the possibility of my son or future children inheriting lymphedema from me.×
05/06/2020 - Albany, California
My friend's son was born with lymphedema and over the past few years I've seen firsthand the impact the diagnosis has had on their lives. He is an incredible kid, but his condition has a significant impact on his toddler life. Beyond that, his condition has been stressful for his parents, particularly just after his birth when they were trying to understand the diagnosis and how they can best support him. More research on lymphedema and treatments (and hopefully a cure) would greatly help not only my friends' family but other families in similar situations.×
05/06/2020 - Carlisle, Pennsylvania
My cousin's son, Grayson, was born with lymphedema. He is one of the sweetest most playful children I know. Grayson has learned to move and operate like a fairly normal kid but knows that his whole life centers around his lymphedema. His diet, his activities, and his growth. While this is not yet a burden he bears, it is certainly a burden his parents bear in order to take care of him and provide him the best support they can. Continuing funding for research allows this family to move forward with vital ways for Grayson to grown and function in a world that does not easily cater to his needs. Funding for this is vital for so many families, not just ours!×
05/06/2020 - San Francisco, California
When my baby cousin was born in August 2016, his birth was met with lots of joy but also fear as the doctor was concerned with swelling in his body that was at the time undiagnosed (later diagnosed as congenital lymphedema). Once we were able to meet him, we were so in love with the cute boy but still worried as no one knew what treatment could be done nor what complications could arise in the future.
Currently his lymphedema is managed by custom daytime and nighttime compression garments. He is a big trooper wearing these and his parents sacrifice to make sure they are able to continue to get him more as he grows. He is an active, sweet boy and our family would love to have more answers to make sure we're caring for him in the best way we can.
05/06/2020 - Huntington Beach, California
I developed lymphedema shortly after removal of all the inguinal lymph nodes in my left leg due to metastatic melanoma. I'm thrilled to be a nearly 20 year survivor of the cancer, but lymphedema is a burden and constant reminder of the disease. My left foot, leg and abdomen are about 20% larger than my right. It has impacted my appearance, self image, health, marriage & many of the athletic activities I used to enjoy. Getting approval for massage therapy, compression garments, and a compression device is a frequent challenge. Even though there have been surgical solutions for several years, my insurance continues to consider it experimental. Even with diligent care, I have suffered cellulitis.
People who suffer this disfiguring and life shortening disease deserve more dollars to go to research for a cure.
05/06/2020 - South Chesterfield, Virginia
I personally know and love a child affected by lymphedema and have seen the stress that this condition has placed on his family and loved ones. Without certainty of medical treatment or financial support, this leaves families in a vulnerable situation where they are trying to manage care, advocate for the child, and assume the financial burden of unpredictable expenses. The hope of a cure would mean the world to those who live with this disease daily.×
05/06/2020 - Coronado, California
I am a cervical cancer survivor of 8 years. Shortly after surgery and treatment I developed lymphedema in my left leg. This is now a life long disease I am left to deal with. Lymphedema is physically and emotionally debilitating. Everyday is a battle to stay healthy. There is so much more to be done within the medical community to help the millions who suffer from lymphedema. Funds are desperately needed for finding a cure and helping find better therapies for patients. Education for doctors, nurses and therapists. Please help us in fighting this disease so we all can live a better life.×
05/06/2020 - San Diego, California
I was diagnosed with Lymphedema after my 6th (ish) bout of cellulitis. I woke on the morning of my wedding with a fever and sever leg and lymph node pain and decided it was time to figure it out. I had experienced unexplained leg swelling off and on since my late teens and most doctors told me to ignore it, or attributed it to chronic ankle sprains from my years of college and professional basketball. One doctor told me I had CHF! I managed it in my 20s and 30s by running, swimming and exercise but periodically got knocked down by a severe infection. Getting the proper diagnosis and treatment have been the key to my improved quality of life, health and mobility, but was only possible because I had access to a health care provider who finally listened and was willing to do the research.×
05/06/2020 - Fremont, California
My late nephew's oldest daughter (my Grand Niece) has a son (My Great Grand Nephew) who was born with and has acute lymphedema. I am the youngest & only living son of the Brunskill (paternal) side of the family, making me the family patriarch. To my knowledge there is not any family history of lymphedema or any form of it, on either my fathers or mothers side of the family. This condition has us all very concerned, particularly amid this Covid-19 pandemic, our Great Grand Nephew is 3+ now, and an active young man with a wonderful happy life. He is so very fortunate to have such wonderful caring parents, and a Nurse Practitioner Grandmother.
However given all the loving and professional care he has, it pales in comparison of what could be done for him and the may others with the same condition. This needs the full weight and power that congress can provide through funding more directed research for therapeutics, and cures for this condition.
05/06/2020 - Modesto, California
My experience with lymphedema is watching a sweet little boy conquer the obstacles he has been given at birth. He has swollen legs and hands, making learning basic motor skills difficult at times. More research and is imperative to learn more about what causes this disease and a cure for it.×
05/06/2020 - Palatine, Illinois
My name is Becca. I am 26 years old and have primary lymphedema in both arms and legs. I found out at 13 through a bunch of tests. I couldn’t run like the other kids, had a hard time fitting in, couldn’t move as easy. Lymphedema has robbed me of my life. I can’t have normal functionality to my legs and arms. I can’t get regular treatment because even with insurance it’s too expensive. I can’t get equipment I need and I can’t get new garments every 6 months like the doc tells me. I have a hard time fitting in at the workplace and getting accommodations. I can’t walk very far. I can’t get in and out of my car that easy. Again, I’m 26. I shouldn’t have these issues. I should be able to manage a horrible disease with affordable healthcare. Doctors don’t even know what this is! They spend a day tops learning about the lymphatic system and meanwhile people like me suffer with improper care and no cure. Do something! Help me so I can have a better life and maybe even be able to share it with someone else. I’m 26.×
05/04/2020 - Oakland, Mississippi
I have struggled with leg pain since I was a little girl. My parents took me to doctors after crying night after night. They were told it was growing pains and I would outgrow it. I didn’t. I wasn’t diagnosed with lymphodema until after age 55. So little is known about my disease that even doctors had no idea. I finally was fortunate enough to have changed primary physicians and because his wife struggled with lymphodema, he sent me to a lymphodema area of his hospital. I live in a rural area and traveled nearly 2 hours each way, 3 times a week for treatment. Because insurance doesn’t cover it, and I lost my job, I could no longer afford treatment. Treatment helps a little but we need a cure! We need education so that more doctors don’t just say, “ you are fat, lose weight”. Hard to do when you can barely move due to heaviness in extremities. Please help us!!! I wake at night with pain, have arthritis in both knees and because I will not heal because of lymphodema, I cannot have knee replacement. The pain is unbearable most days. I beg of you to educate and do more research to find a cure!!!!×
04/30/2020 - Lone Tree, Colorado
I have secondary lymphedema in my legs due to cervical cancer treatment in 2007. I underwent a hysterectomy, chemotherapy, radiation and had thirty-six lymph nodes removed.
My lymphedema presented in March 2016, nine years later, with swelling in my left ankle. Within a week my entire leg was swollen and I could not fit in my shoes. After a series of emergency room and doctor visits, I was diagnosed with lymphedema.
After my diagnosis, I immersed myself in research and realized attention needs to be brought to lymphedema and lymphatic diseases. I was shocked that an estimated 10 million Americans suffer from this disease and yet it is rarely known, discussed or understood, even in medical communities. Additionally, lymphedema affects a significant number of our military veterans - you likely know someone either with or at risk of this disease. Not only is this disease painful and a financial burden, it also carries a heavy psychosocial impact due to disfigurement and ignorance.
I vow to do everything to raise awareness, to be an advocate, to work towards fair treatment and a cure. A cure would mean freedom for me and all those who suffer from this debilitating disease. We ask that Congress prioritize funds for research and education to help us find a cure and help us overcome this disease.
04/27/2020 - Anchorage, Alaska
I have struggled with lymphedema my whole adult life. Like many others, surgery stopped the cancer but also started a lifelong struggle with chronic swelling in my right leg and foot.
I lived my lymphedema life in isolation, unaware of the millions of others who shared my struggle. My doctors had little or nothing to offer me. They became a repetitive chorus of “I don’t know what to tell you”.
In 1998 I had an emergency C-section to a preemie, and was introduced to treatment. After that, I had lymph node transfer surgery in 2014. I am religious about compression stockings. Eventually, I learned about online support groups. I learned that I was not alone.
Once I broke free of my isolation, I found myself intensely motivated to do something to make our lives better. This is when we, myself and 2 co-founders, started a shoe company to make shoes to accommodate edema. Because of this, I talk with lymphies every day. There are so many others suffering because they don’t have the right support or treatment. Good treatment is indeed the secret to health and happiness for everyone like me that has this chronic condition.
04/15/2020 - Salem, Virginia
When I was 39 years old I was in the best shape of my life. I was an active, competitive triathlete living my best life with my husband and 2 young children. Suddenly and unexpectedly the course of my life changed. I was diagnosed with cervical adenocarcinoma (Stage 2B) and had a radical hysterectomy. I developed lymphedema immediately but it was never diagnosed until a year later. The physical changes, cellulitis and emotional trauma have taken a toll on me both personally and professionally. My life included a divorce, PTSD, manual lymphatic drainage and use of a pump. Taking care of my leg and my health has become a full-time job. Thousands of dollars spent on garments to help control it
that are not covered by insurance and I feel blessed. I am extremely grateful to be able to afford them. The pain is a reminder of the trauma on a daily basis. Caring for lymphedema as we age does not get easier, rather it becomes more challenging. We need focused research to find a better way to detect the spread of cancer that doesn’t have life altering, forever consequences or a way to cure.
04/15/2020 - Cincinnati, Ohio
My experience with lymphadema began in 2016, seven months after my surgery for ovarian cancer. The most disappointing and shocking think for me was that no one in my healthcare team had mentioned that lymphadema was a possibility and no one was concerned when the swelling in my lower leg appeared. I found out about lymphadema by searching and reading on the internet. When I asked my oncologist, he wanted to "wait and see." I requested a referral to a lymphadema physical therapist who confirmed my condition, and I began wearing a compression stocking that day and learning the other daily care I would need to follow for the rest of my life.
Since my oncologist was an excellent and very caring doctor at a university medical center, I suspected that other cancer survivors were no more likely to hear about lymphadema from their healthcare providers than I had been. I continue to feel strongly that this situation needs to change. More research would help us understand the disease and bring more awareness of it.
Lymphadema takes a physical and emotional toll. Much of this toll could be avoided with the research and awareness to understand, treat, and prevent this disease.
04/15/2020 - Pottstown, Pennsylvania
I am a 61 y/o RN who underwent chemo, surgery, and radiation in 2016 for breast cancer. That was traumatic ,but developing lymphedema as result of lymph node removal in 2018 has been more difficult since there is no cure, the effects are visible to all, and the treatment is visible to all causing me to have to continually explain to folks why my arm is wrapped. It's exhausting emotionally and affects my self image. The garments are expensive, therapy with a lymphedema therapist requires a $50 copay each time and they want to see me daily when I have a flare up. I have a hard time physically tolerating the garments.
04/15/2020 - Pleasanton, California
Immediately after Grayson was born (August 2016), the delivery pediatrician was concerned with the atypical full body swelling (later diagnosed as congenital lymphedema) and sent him to the NICU for observation. We were in the hospital for 5 days for monitoring, running labs, tests, and genetic tests to try and understand what was happening. No one could find a cause. Which is where we still are today, in medical limbo and blind to any complications that could come down the road. A parent’s worst nightmare.
Currently Grayson’s lymphedema is managed by custom daytime and nighttime compression garments. These garments have to be specially made for him in different parts of the world as there are no off-shelf garments for children. Additionally, these garments need to be replaced every 3-4 months to accommodate his rapid typical growth that is typical for young children. This has led to a huge financial burden on our family as one full set of daytime garments can cost up to $4000 and a nighttime set up to $5000. To date, insurance fights us every step of the way and at times, denies these medically necessary treatments.
04/13/2020 - Fort Worth, Texas
My name is Ana Alvarado. I was diagnosed in 2009 at age 21 with secondary Lymphadema. I had a removal of a tumor in the right growing, chemotherapy and radiation due to cancer diagnosis. Due to the tumor my leg was swollen from the growing all the way down to my toes. The doctor who performed my surgery said swelling would go away after 1 year. A year went by and the swelling from the knee to the growing never went away, it was only getting worse, I visited a doctor at Md. Anderson who diagnosed me with Lymphadema. Living with Lymphadema is a day to day challenge. It has effected me physically and emotionally, I can not wear shorts, dresses, skirts due to the swelling. There is days where I can’t even cook because the pain in my leg is overbearing. I am a mortgage processor and my job consist of sitting at a desk for 8 hours and there are days I can’t handle it. I’m afraid that one day I will have to quit my job. I do my best to care for myself, but sometimes it’s never enough. Due to the social distancing taking place I have been working from home for 3 weeks now, this morning I woke up with swelling in my ankle something that is not normal for me, I am afraid this will become my new normal.×
04/13/2020 - Columbia, Missouri
I’m 49 years old, a breast cancer survivor and I have lymphedema in my arm, hand and breast due to cancer treatments that saved my life. I’m grateful to be here, but my new normal now involves exhausting daily care (manual lymph drainage and using a pump 1 hour everyday) in the hopes of stopping this regressive disease and avoiding cellulitis and sepsis. I have annual expenses for armsleeves, gauntlets and bras. None of these costs are covered by insurance and requires nightly washing and care. I have to be careful in the sun, can’t exercise like I used to and my daily care takes time away from my loved ones, my life has changed. But the scariest part is doctors barely understand this disease and it’s impacts. There needs to be funding for those of us who deal with this daily, funding for research and an increased emphasis on this disease and the lymphatic system for medical students and nurses. I am blessed to be in early stages, for now, and fully employed, for now, but my future scares me with this disease. Please, please, please pass this bill to improve care and resources for a disease that affects millions of people.×
04/10/2020 - Chicago, Illinois
I was a successful practicing physician, overseeing the Occupational Medicine and Employee Health Departments of the largest healthcare system in Illinois when a diagnosis of lymphedema completely disrupted my entire life. Breast cancer treatment left me disabled from lymphedema in my right upper extremity, stripping me of my life-long dream of being a practicing physician. I was subsequently terminated from my executive management position, while on FMLA during physical therapy for treatment of my lymphedema, and I had to completely reinvent myself after 16 years of clinical practice.
I went on to become a best-selling author and highly sought after physician leader, but my journey was not without its challenges. Lymphedema was a secondary blow to my physical and emotional well-being. I wondered if I would never be able to get on with my life. I experienced high levels of psychological, social, sexual, and functional morbidity. Witnessing the disparity among African American women with this disease, I created a 501c3 nonprofit organization, the LIVE Today Foundation, Inc. which provides free compression garments to under-resourced cancer survivors living with lymphedema and I support other grassroots organizations, like LERN that are making an impact in the lives of individuals with this disease.
04/10/2020 - Collierville, Tennessee
My name is Andrea Abernathy Briggs of Memphis, Tn and I obtained my lymphedema issues back in 2007 due to a slip and fall at my job. Over the years, I have had issues of the swelling of my legs, back to back bacterial and viral infections, and osteoarthritis. I have done everything from leg wraps, pumps, and massages. But after 10 years, I have no willpower to continue the treatments. Now I am in a nursing home/rehab center for my right knee that one of my doctors was concerned about when my walking was getting bad. But after being in a hospital before going to the nursing home, I lost 125 lbs. of water weight and, unfortunately, the muscle strength in my legs. And gain atrophy in my legs. I am doing exercises in bed and getting some of my leg strength back, but need a lift to get me out of bed and into a wheelchair. I have no infections at this time, but if I were to go back home and this virus issue is still running rampant, I won't have anyone to help me in my time of need. If I ever get back to my normal life without lymphedema, I can work on my house, attend meetings with my convention group, shop for food, clothes, and supplies, and visit friends and family members. The dream is there but this struggle is forever real.×
04/10/2020 - Logan, Ohio
I was finally diagnosed in 2015, after dealing with the effects of primary lymphedema since the C-section of my second child for 30 years. Ageing made it worse, finally unable to walk I sought treatment. Most of the OT , and pressure garments not covered by my insurance. Luckily, my pumps were covered. I have had to limit my work time due to lymphedema. This disease requires 2-3 hours a day to maintain the strength to function a normal life.
04/10/2020 - Fremont, California
2000 I went into the hospital for a regular total abdominal hysterectomy with bilateral slapping-oophorectomy . The surgery was complicated by cervical cancer with bladder metastasis. After 8 weeks of chemo and radiation I was diagnosed with adenocarcinoma stage 4. I started the fight for my life. I was 45 years old, married and with three children.
My surgery involved removing the bladder and creating a pseudo bladder formed from my small bowel. Part of the surgery involved creating a temporary iliostomy and vaginal reconstruction.
September 2003 returned to work as a home health nurse
2003-2005, I started developing left leg edema and having episodes of celluitis.
Consequently, multiple tests, diuretics prescribed, and incorrect diagnoses
September 2005 a diagnoses of Lymphedema
2005-2020 Lymphedema therapy, financial costs for compression therapy, time consuming self care and frustration trying to have a normal healthy life. Re: finding shoes to fit
2019-2020 candidate for Lymph node transplant with liposuction. Insurance denied it because they said it was for cosmetic reasons! Later informed that the surgeon was not a advocate for my surgery
2020 Second consult lymph node transfer,with no post compressions and a Dr who would support my cause Insurance approve.
Surgery canceled due to Covid 19 surgery date pending.
04/10/2020 - San Diego, California
My name is Lindsay Bennett, and I am 28-year-old female who loves sports and being active. I grew up playing sports. I played soccer, softball, tennis, basketball, lacrosse, football, rugby, and field hockey. You name it, I was trying it. I fell in love with field hockey when I started playing in high school and got a Division 1 scholarship to play at Northeastern University. My dreams had come true until they were later shattered. I was diagnosed with Lymphedema at the age of 23. Needless to say, my life will never be the same.
This disease destroys me physically and emotionally. Every morning I wake up with a big black night garment on and reminded that I'm not normal. Taking care of my lymphedema is a 24-hour day job. It's a constant worry how my leg feels, how my leg looks, and how my leg will handle the day-to-day activities.
A cure for lymphedema would make me whole again. It would allow me to not plan my every move and just life my life. It would propel me to fulfill my career dreams and be a normal 28-year-old female again. A cure for lymphedema would change my life forever.
04/10/2020 - Greenville, South Carolina
My name is LaShonn and I’m a resident of Greenville South Carolina. I developed Lymphedema 21 years ago after my third caesarean. The lymphatic disease caused my feet to swell so badly that I was unable to wear appropriate shoes in a corporate environment which drastically changed my quality of life. I urge Congress to help our efforts in moving the Lymphedema agenda to the forefront so that we can find a cure. No one should have to live like this and not be able to feel confident about themselves due to a disease. I know there is a cure out there and with Congress support I feel confident that we can find that cure soon.×
04/10/2020 - Micco, Florida
After having a lymph node removed due to a melanoma on my arm, I got the ok from the Drs that all was good. Six weeks later my breast became red, swollen, fever & chills. I was given an antibiotic & it went away. I had this reoccur 14 times in 4 years. I went to 9 Drs to find out why and no one knew, they just kept giving me antibios. 3 Breast surgeons, general surgeons, infectious disease Drs, Dermos, Gynos, etc ..no one knew. I finally got referred to a lymphedema clinic and they trained my to do manual daily massages. I wear a compression garment all day everyday. Drs need to know more about this disease.. I haven't had any infections in two yrs since going to a lymphedema clinic.
04/10/2020 - Houston, Texas
My name is Cam Ayala, and I am a 31-year-old hereditary lymphedema patient. I have been managing this chronic disease since I was 11 years old. I was born and raised in Houston Texas which has the largest medical center and some of the top physicians in the world, and it still took over a year for me to get the proper diagnosis. Lymphedema is not a one size fits all disease. Though many patients experience similar symptoms, each patient has his or her own unique case which further validates the extreme necessity for further research to better understand this unique disease that impacts over 20 million Americans alone. Professionally, I am a compression therapy consultant for a company who manufactures pneumatic compression pumps for home therapy treatment prescribed to patients who suffer with lymphedema and other chronic swelling conditions in which there is no current cure for. Day in and day out I experience patients being denied the care that they need due to lack of physician diagnosing accurately, and a severe lack of insurance coverage for necessary treatment. We are also better understanding of the genetic components of Lymphedema which means there is a strong likelihood that my future children could inherit this chronic disease. I encourage you to hear our cries into prioritize funds that are extremely needed to facilitate research and education for a cure!×
04/10/2020 - Toms River, New Jersey
I am 78 years old living on a fixed income! I've had lymphedema for years and because I couldn't afford treatment! It's gotten worst! I I really feel like I will be dying soon! I really need help Thankyou!×
04/09/2020 - Easton, Pennsylvania
I have secondary Lymphedema from Synovial Sarcoma Cancer, at the age of 17. They never thought I would make it, but I’ve survived the cancer (not once but twice) and ended up with Lymphedema for the rest of my life. Yes, I’m thankful for surviving a very low rate survival cancer. Unfortunately my life had completely changed with a deformed leg. As a teenager then through my adult years it has been a struggle every day. Not having the money to pay for garments, that are essential, and insurance does not cover. Going out in public trying to feel normal with out people staring at you. Trying to find pants and shoes to fit. Bearing the pain, with many sleepless nights. Being as cautious as possible not to get an infection, which leads up to cellulitis and hospital stays. I could go on..... Please we need your help. If you or your loved one had this you would want to help them. Thank You!
04/09/2020 - Melbourne, FL, Florida
I am Co-owner of Space Coast Lymphedema clinic in Melbourne FL. Lymphedema is under recognized, under treated and misunderstood. We have educated community doctors. We have gone from 10 new clients per month to 40 per month in the 5 years we have been in business. Medicare pays for therapy but sadly these patients need life long compression to maintain the decongestion obtained to prevent potential life threaten infections. Many patients do not have the funds to pay for them and their condition worsens. Please pass the lymphedema reduction bill/act.×
04/09/2020 - Granite City, Illinois
I am a teacher, mother, grandmother, wife, and breast cancer survivor. Now adding caretaker of myself to the list. It's fine, I can handle it. But living life after cancer should be joyful. Sitting in a lymphedema pump EVERYDAY, is not joyful. Taping, washing garments, and trying not to complain, not joyful. Paying for all of this, not joyful. The fact that doctors don't know enough about it to help, not joyful. I don't want to be just a survivor. I want what you have, the possibility of enjoying my life again.
04/09/2020 - Austin, Texas
I was diagnosed with endometrial cancer at age 57 in May 2013. I had a complete hysterectomy and removal of 40 pelvic lymph nodes. The nodes were all clean.
By October 2013 I was diagnosed with lymphedema in both legs and torso. I wear compression garments day and night, 23/7, exercise twice daily, do self massage daily and require professional lymphatic massage twice a week to manage the swelling. In 2018 the lymphedema spread to my left arm. I am still working full time at age 64 and I don’t see retirement any where in sight. My expenses for garments and therapy run $25,000 a year. My insurance covers some of the cost of garments, but in a year when I go on Medicare, without private insurance the entire cost of these expenses is mine. A cure for lymphedema, a progressive, chronic disease would change my life. I live in fear of not being able to afford the garments and therapy required to slow its progression. Millions of peoples’ lives would be transformed with a cure, and access to compression and good medical care for management of lymphedema would save hundreds of millions of dollars. Please vote for legislation to help find a cure for this heartbreaking disease.
04/09/2020 - Sylmar, California
I have had symptoms of Lymphedema in both legs for over 40 years, but was only just diagnosed in 2015. Lymphedema causes me almost daily pain, often times so severe it makes it difficult to get around. There are no medications or treatments to relieve the pain, so I must try as best as I can to get through it until it eases on its own. I have learned that a delay in diagnosis happens to a lot of patients because of the lack of proper education of this condition by medical students & physicians and this was true in my case. Once I was diagnosed I found it extremely difficult to get the proper medical compression supplies that were needed to treat and manage my Lymphedema. My Medicare insurance has not paid for any of my compression supplies, so I have to pay out of pocket, which is a large expense for most people, but even more so for individuals like myself who are living on social security disability (due to my condition). In order to reduce or prolong the chances of the swelling in my legs getting worse, I must wear compression garments every day. Finding a cure for Lymphedema would make it possible for me & all others with Lymphedema to be able to live without the pain & full-time daily care involved with managing this disease. It would also relieve us from the high cost that puts many of us in financial hardships.×
04/09/2020 - Wynnewood, Pennsylvania
Back in 2015 and after a year of being dismissed of my symptoms by my Gynecologist it was determined that I had cervical cancer. Because it was found so late I had to undergo a radical hysterectomy which included removal of 60 lymph nodes.
I was grateful to have been given a second chance and to be rid of cancer, but 6 months later while exercising I felt swelling in my left leg. As the days went on the swelling increased. I went to my doctor and was diagnosed with lymphedema. My leg no longer felt like it was a part of me, but instead felt like a was dragging luggage everywhere I went.
In 1996 I underwent another surgery to reroute my lymph nodes using my veins. This Surgery has helped a lot however, I still need to wear compression garments every day, my leg needs to be wrapped every night before bed and I have to make time to massage my leg daily.
To say the quality of my life has changed is an understatement. I will never take for granted all that our bodies are capable of.
I do hope more services will become available and more research for a cure is something I will one day be fortunate enough to benefit from.
04/09/2020 - Cambria Heights, New York
2016 l developed a lump on my thigh, at first I thought it was just a pimple. Within weeks it grew so fast my PCP saw it told me she believes it was sarcoma and sent me to a surgeon. Within a month I had cancer and lymph nodes removed and 2 months of radiation. Then the pain and swelling started. I use to run and play with my grandchildren, now I can’t walk fast enough to keep up with anyone. I have missed a lot of family functions because sitting or standing longer than 10 minutes causes exquesating pain and swelling. Today I take pain medicine, do exercises, and pay for lots of equipment, compression garments l truely can’t afford. Three and a half years I have ups and downs no cure, my quality of life is so low depression is part of my life. My insurance hardly pays for anything. I stopped therapy because I couldn’t afford it.×
04/09/2020 - Manchester, Missouri
In 2016 I was diagnosed with breast cancer. I had chemo, double mastectomy surgery and radiation. I lost most of my right side axial lymphnodes. I have lymphedema in both arms, and in my trunk. I need a minimum $210 worth of compression garments every six months.×
04/09/2020 - The Plains, Virginia
In 2013, age 46, a partial hysterectomy, because of a fibroid, revealed an early grade endometrial cancer. Having both fallopian tubes and ovaries removed with a lymph node dissection two weeks later revealed my early grade cancer, that should never spread, did spread to both ovaries and one lymph node. Diagnosed with Stage III endometrial cancer, I had 6 cycles of chemo followed by daily radiation treatments lasting 6 mo. As a registered mammographer, and my husband a radiologist, we were concerned about lymphedema (LE). My oncology surgeon, who retired shortly after my surgery, repeatedly said I would not be affected. During a follow-up appointment with my new oncology surgeon four months later, I was diagnosed with secondary lymphedema of my right leg. I was fortunate to find a local physical therapist specializing in LE, and did everything prescribed: barbaric leg wrapping, weekly PT appointments for manual lymph drainage which didn’t help, and wore compression garments all day every day. Insurance coverage was minimal. Unable to work ever again, with my entire right leg, buttocks and abdomen swollen, and unable to find clothes/shoes to wear, I became reclusive. I eventually purchased an extremely expensive lymphatic pump to use daily, even when traveling, in addition to wearing compression garments for the rest of my life. LE is worse than a cancer diagnosis/treatment.×
04/09/2020 - Allentown, Pennsylvania
I am grateful, beyond measure, to be approaching five years past the end of my treatment for uterine cancer. Unfortunately, that treatment caused LE in my left leg.
After considrable trial and error, I came to manage my disease with regular exercise, careful food choices, using a compression pump, and wearing a thigh-high compression stocking. From the moment I awake and don the stocking before leaving my bed and the reverse at bedtime, I constantly think about managing my activities and all of the above to prevent flare ups. It's a full-time job. No days off. Ever!
So, if there was a cure or treatment for LE, it would eliminate all those burdensome daily concerns. As well, I would regain confidence in my appearance and be significantly more active. But the most thrilling thing? I could once again sit. Yes, sit! Like most people do, feet on the floor, or legs or ankles casually crossed. No need to elevate my left leg! I could sit comfortably at my piano, my studio drafting table, in my friend's homes, at the movies, concerts, restaurants, in the car--all the places we take sitting for granted. I sometimes dream about sitting like I used to. A simple thing, until it isn't.
Thank you for your time and attention.
04/09/2020 - Burton, Michigan
I have secondary lymphedema from cervical cancer. I have struggled with Mis-diagnosis and unknowledgeable medical staff for 10 years. I have been unable to see a therapist due to the high cost and I am in need of new compression. I was just recently able to receive a free consultation and have been diagnosed at a stage 2. Now during the pandemic, I am unable to seek treatment and I am currently fighting a cellulitis infection as a result. I am not even able to go to the hospital at this time. Having the tools that are beneficial in fighting this chronic illness can be detrimental. Being able to access proper medial care and garments would reduce so many unnecessary infections and illness. Please help me in the fight against lymphedema.×
04/09/2020 - Deming, New Mexico
I am 23 years old and have primary Lymphedema on my entire left side only. Since I was 14 I have been getting treated for it but I’ve had this condition since I was 9. For five years I was sent to numerous specialists from bone specialist to blood, and the lack of knowledge by medical professionals about Lymphedema caused mine to get worse over time. Once I was being treated we found out my insurance doesn’t cover the most important tool in managing this condition, the compression stockings. I was raised by my great-grandmother who didn’t have much and couldn’t afford these stockings. Till this day I can’t afford them, I work a full time job and pay all my bills on my own. I don’t have money to spare to pay for my necessary stockings.×
04/09/2020 - Seattle, Washington
As an active and athletic person, I had noticed a few times that my feet were starting to swell after a long run or hard workout and then it started happening more and more and there was more intense pain associated with it until finally, my feet and legs would swell and hurt during a regular day, not just after a workout or long event. I was finally diagnosed with primary lymphedema at age 38 when I went to a physical therapist for a curling injury to my ankle and she said she would help with that, but I also needed extensive wrapping and manual lymph drainage for my lymphedema. I had no idea that was what I had until she diagnosed it! I had always had larger legs and no matter how much I exercised, they didn't get smaller. A cure would mean I could go back to exercising and being active like I have been in the past, less (or hopefully no) pain during long events when I have to stand and boost my self-confidence a considerable amount so I don't have to hide under long pants and skirts anymore and can wear normal shoes!
04/09/2020 - Berne, New York
My name is Emma, I’m 11 and I was born with primary lymphedema in my legs and feet. I’m a youth ambassador for LE&RN because we need more knowledge and research about the lymphatic system and eventually we need a cure. Most of the time I can live a normal life except for having to wear compression all the time. But when I get sick with cellulitis I miss out on life for weeks at a time. I’m 11, I’ve had 13 cellulitis infections and I’ve been hospitalized 9 times. Unless we can get the government to fund more research to find a cure these numbers are only going to get bigger. I try not to let it get to me but it is actually a really sad thing. I’m doing my best to try to fix things for everyone who suffers. I try to be the change. I have lobbied in NY and DC since I was 7 and attended over 50 congressional meetings so far. I fundraise for a cure with my own lemonade stand and try to help pass bills like the LTA that would help people afford compression. That’s a big problem right now and an easy fix. But we need your help. We need a cure for lymphedema and all lymphatic diseases and with your help we can all find a cure together.×
04/09/2020 - Pelham, New York
In 2008, at age 51, I was diagnosed with uterine cancer. I had a total hysterectomy upon the advice of my GP, who also told me that would take care of it all. Less than six months later it had returned. This time I was told my chances were 50/50 of beating it. After 34 rds of radiation, a year+ of chemo I was set free without a word of warning about lymphedema. Even though I had some early signs that I brought to drs' attention. I was grateful to be cured and even with years of frequent followup appointments, I was never warned about how to avoid or recognize lymphedema. I had swelling in my ankle and foot if I stood too long, if it was hot out, and was told many people do. August 2019 my entire right leg "blew up" during my daughter's wedding weekend. It never went away despite elevating and sitting out the dancing, the celebration. It took several months waitlist to see a specialist to evaluate and provide any therapy for it. I am still grateful to be living but mourn that it means the end of being able to stand long enough to finish a painting, to be much of a caretaker for my grandchild, care for my garden lest I get bit or scratched and get cellulitis, I can't go into NYC by train because it involves more walking than my compression stockings can hold back. It makes me feel old too soon. And maybe it could have been prevented with the right care and information.×
04/09/2020 - Katy, Texas
I was born with a form of genetic Lymphedema called Lymphedema–distichiasis syndrome which presented in 1994 in one leg, but eventually spread to both legs (bilateral lower extremities). Although I was aware that I was primary, I did not know about being this specific type and the connection between my eyelashes and my legs. I’m 45 years old and developed it at age 20. This means I have lived over ½ my life with this disease with little to no support. It is physically and emotionally painful.
I am 3rd generation in my family to have this incurable condition. My grandfather was also bilateral like me. I also have an Uncle and two first cousins currently living with LE. Lymphedema has run in my family for over 115 years. All of us are native Texans.
My blog, Lymphie Strong, was created in September of 2015. Lymphie Strong is dedicated to my father, Pete, who lived with lymphedema of the left leg since the early 1970’s. He was the strongest person living with it that I personally knew, and my hero in the daily fight against lymphedema. He lived with LE for over 4 decades with the first 24 years being completely misdiagnosed, untreated, and enduring over 100 bouts of cellulitis.
Sadly, my father passed away in June 2016 from cancer. While I am devastated at the loss of my father, I am comforted that part of his legacy will live on in helping others with lymphedema.
04/09/2020 - Berne, New York
Lymphedema is the bane of my existence. In 2008, my daughter was born seemingly healthy. We first noticed her swollen foot at 7 months old. She didn’t get a proper diagnosis of primary lymphedema until she was 1 and 1/2 and by that time her lymphedema had progressed to both feet and both legs. The next few years would prove to be the most trying, traumatizing years of my life. A lack of knowledgeable doctors, therapists and insurance companies along with the struggles to find proper treatment topped with cellulitis infections and a very sick little girl, actually led to a PTSD diagnosis for myself. The disease and lack of knowledge surrounding it was literally killing us both. We decided to take charge instead of letting it win and joined forces with LE&RN. The patients we have met along the way inspire us to fight harder everyday, but we can’t do it alone. My daughter, Emma, and I fundraise for LE&RN every year, we lobby in NY and DC for proper insurance coverage and research funding every year, Emma’s a youth ambassador and I chair the NY chapter, but really, I’m just a mom trying to fix her little girl. Now, we need you. It’s time to research the lymphatic system and find cures. We are so close to finding real answers which will not only cure lymphedema & lymphatic diseases but many other diseases as well. Please keep LE&RN’s initiatives at the forefront of your agenda.×
04/09/2020 - Guilford, Vermont
Lymphedema causes me some amount of pain most days and limits the amount of time I can stand up. It makes me worry about my future and about passing down my genes to children if I have them. It made me go through a horrible and traumatic diagnosis process with an ill-informed doctor, and it makes me wear uncomfortable compression garments for 16 hours a day. A cure for lymphedema would be amazing. Lymphedema is a financial, physical, and emotional burden on so many people. There is so little research into this disease, and treatments have barely changed since it was first discovered. It is time to invest in the research we need to cure lymphedema.×
04/09/2020 - Coatesville, Pennsylvania
Hi, I am 54 years old and have stage 3 Lipedema with secondary Lymphedema.
I was just diagnosed a few years ago. I grew up all my life struggling with weight. I was always told that I ate too much and needed to exercise more. That was not true. I was always active and have been on a "diet" since the age of 12. If I were to have a diagnosis earlier on, I could have used wraps, leg pumps, dry brushing. MLD, etc to help slow down the progression of my disease. I have just had both hips replaced (5 years apart), and I believe this was due to carrying extra weight on my lower half, which could have been dealt with earlier on.
I urge you to please help us get proper diagnosis, and help us to have access to qualified health providers. We also need to have insurance coverage of supplies. I spend 300-400 dollars every time I purchase my wraps. They are supposed to be replaced every 6 months. I stretch the time out to 8-10 months. Because of my condition, I no longer work, so it is a hardship for me to pay for them.
Please help us to get this disease recognized and help us get proper treatment and supplies. thank you
04/09/2020 - Hillsborough, North Carolina
After getting through a mastectomy, chemo, radiation, blood clots from the chemo port, an occluded BC vein, a broken leg, and a parathyroidectomy, I was just waiting for the other mastectomy (pandemic postponed) and I thought I would be in the clear. I was wrong. Lymphedema hit me like a ton of bricks. Because of the lack of research and knowledge about this disease, it may be scarier than cancer and in many cases, more debilitating, with EXTREME costs for society due to work loss and health care issues. PLEASE do more to help.
04/09/2020 - Clinton, South Carolina
18 yrs ago I had my first child. I spent the next nearly 10 years fighting swelling in my feet, ankles and calves. I had leg infection after leg infection. It took a dual leg infection from toes to above my knees before I was referred to a vascular dr, and was diagnosed with bilateral lower leg lymphedema. I now wear compression stockings daily, but cannot afford a pump. Help is needed to find a cure for this debilitating disease. My leg tissues are starting to harden and I have to wear special thick garments over night to help break up the fibrosis.
A cure in my time would allow me the freedom to enjoy more activities with my kids and future grandkids. I live in constant fear of a leg infection. Despite precautions my last leg infection was in 2019, and I spent 21 days on antibiotics to clear it up.
04/09/2020 - Scottsdale, Arizona
Diagnosed in 2018 at age 34 after a single lymph node removed for a melanoma diagnosis. Lymphedema rules my life: my comfort, my confidence, my ability to get up and go. The 24/7 compression is a daily reminder of cancer and what I have lost. I have two young kids and want to do everything in my power to stop lymphedema progression so I can be the mom I want to be for them.×
04/08/2020 - Geneva, Nebraska
I was 18 yrs & got a DVT (2000) in my leg after 3 wks of being on b.c. pills (that I did not want); 12 yrs of Dr.'s shrugging off my swelling concerns finally came to a diagnosis of lymphedema l.e. (2011). Last yr (2019) needed surgery & now my leg swells more easily & faster than ever. My story has been forever changed in ways I never imagined it would be. So many things I can't do now that I once took for granted. Please help find us a cure.×
04/08/2020 - Boca Raton, Florida
I was born with primary lymphedema in both hands and arms and went 12 years without a proper diagnosis. I lost those 12 precious years of what could have been valuable treatment and a possibility of compression garments to help manage, but instead was told there was nothing they could do for me. Between having my hands be called "hot air balloons" in kindergarten, and being avoided for fear if kids got too close they could "catch" my disease, I had to learn to develop a thick skin early on. I found a passion for tennis when I was seven, but having lymphedema made it tough as name calling continued but worse than that, traveling to different climates and by plane caused unwarranted swelling or even heat exhaustion.
There is not enough funding and support for lymphedema and lymphatic diseases. My hopes is that our stories can raise awareness and make lymphatic diseases known, but to ultimately achieve the means for research to someday find a cure. I was lucky and am now able to manage my lymphedema, but there are thousands of individuals living with chronic lymphatic diseases that do not have what they need nor have the medical and financial support their disease requires to have a high quality of life.
04/08/2020 - Cary, North Carolina
Two of the most thrilling moments in my life were the birth of my daughter & son. My excitement was dampened by the fact that I had a clot with each child; first the right leg and second the left. The surgeon explained the danger of leaving the clots alone and his recommendation was surgery to remove the clots. I had no idea that the removal would hamper my life style for the rest of my life. I immediately had swelling of the legs with a great deal of pain. The greatest thrill is to have your children run to you so they can give you a big hug. I never made a sound but I clinched my teeth to stop screaming. When my children squeezed my legs I'd want to scream with pain but I knew I couldn't do that to loving children. To add insult to injury most insurance companies were not willing to give any financial aid to pay for support garments, therapy sessions and other unexpected expenses. I am more fortunate than many in that I did have some assistance financially and a good support network of family & friends. This disease is not requested by anyone and should be treated as a disease such as cancer. Please search your hearts & think how you'd feel it this happened to your mother, wife or daughter. Also men are affected so it could be a son or grandson who is stressed for life.×
04/08/2020 - Ashburnham, Massachusetts
I had breast cancer and a mastectomy when I
was 33 years old. Fifteen years later, I developed a swelling in the affected arm. My doctor had no idea what was causing this and thought I had phlebitis. I developed cellulitis twice and had 30 days of antibiotics both times while teaching full time and wearing a heparin lock.
The swelling continued so my doctor sent me for an ultrasound. The technician who performed it said what I had was called lymphedema and gave me a handout and the name of a physical therapist at Leahy Hospital (45 miles away) I had just started a new job and my principal kindly arranged my classes so that I could travel (75 miles in all) to the clinic for treatment and then to work. There were no local treatment centers. I currently wear compression garments and a heavier night garment to maintain my lymphedema. My arm is weak and I now have neuropathy and neuralgia in my left hand. I hope for more advanced research and better guidelines discriminated to doctors regarding treatment of this disease.
04/08/2020 - Tampa, Florida
I’m 41yrs old and started showing symptoms of lymphedema at age 15. I went to numerous doctors but none knew what was wrong. At 23 I was diagnosed with primary lymphedema. I’ve had recurrent cellulitis (serious bacterial skin infections) over the last 17 years. I’m unable to do activities like go to the beach, wear heals/boots or walk long distances. I’ve had numerous visits to the ER, hospitalizations, infectious disease treatments & IV antibiotics costing myself & my insurance thousands of dollars. These costs would be significantly reduced for thousands of individuals if Medicare & health insurance companies covered preventative compression garments. I paid $850 for 1 pair of custom thigh highs; my insurance only covers cancer related lymphedema. Those patients make up a fraction of cases. Garments are expected to last only 6 months before needing replacement. This is a lifelong condition with no cure; an expense for the rest of ones life. Please take action. You’d be saving patients thousands of dollars, insurance companies millions as good compression is the best prevention for recurrent bacterial infections/hospitalizations. Once a person experiences cellulitis, their lymphatic system is further damaged making them more susceptible to infections. A vicious cycle. My 4yr old was diagnosed; it pains me to know he has a lifelong struggle ahead with no cure & little research×
04/08/2020 - New Britain, Connecticut
I am 80 years old. Had polio when I was 10 which paralyzed both my legs. Have used wheelchair since. Developed lymphadenopathy in my legs last year. Not able to sit in my wheelchair cause legs don’t.
04/08/2020 - Phoenix, Arizona
I was 35 years old, had two small kids and had just started working as a teatcher in Elementary School, when I was diagnosed with cancer. After treatment I ended up with lymphadema in my left leg and it felt like a slap in the face. I can no longer work full time as a teatcher, my level of activity is much lower than before and I have to rest several times through the day. Though I am cancer free, I am reminded of what it did to my body and my life every day for the rest of my life.×
04/08/2020 - Glendale Heights, Illinois
i woke up one day at age 33 when my life flipped around. i was diagnosed with this disorder of degenetative disc disease where i have had 8 back related surgeries. i now have lymphadema in my legs & feet where I have problems keeping job & keeping pain at bay with flair ups. I'm afraid of salt any salt...I cry daily in shower it seems from frustration & pain & I'm 46 feeling like 86. No help from doctors or insurance- are u kidding me? This crippled me & I get no help? My life is over I feel & I ruined my husband's life by marrying him. Honestly it's so sad that no one will help out this disease or whatever this hell is called. It's sad that this is not taken as serious as some other similar illnesses. It's also so finacially draining. Tons $$ spent on compression socks & pants & wraps & so many on market are no good or are false that do not last long in holding material. BECAUSE THIS CAN COME FROM SECONDARY CONDITIONS IT SHOULD BE TOP PRIORITY...MORE RESEARCH HERE COULD MEAN MORE HELP FOR OTHER HEALTH ISSUES?!!
being told that it's fixable if gets treatment fast but irreversible if ignored too long! What? My docs not take serious enough says to just wear compression socks. What? Um- I can't even get socks on me! Not happy that people don't care enough? People shouldn't have to live in skin they are being tortured by. Skin is largest organ of body. Should be huge priority.....
04/08/2020 - Beckwourth, California
Surviving breast cancer, mastectomy with reconstruction and radiation treatments, lymphedema was the icing on the cake. Even though I'm a cancer survivor, lymphedema is a daily reminder of that fight. In other words, there isn't a day that I don't think about cancer. Daily message, compression sleeve, nightly flexitouch pump usage, physical therapy support with laser treatments.....how could I forget about my fight with cancer. Even getting dressed every day, trying to find something to wear that will fit over my enlarged arm is frustrating. My closet is full of clothes that I can no longer wear or feel comfortable in. Wearing a compression sleeve always conjures up questions from strangers and even family members....it becomes a conversation that I don't want to be having on a daily basis. This doesn't seem like much, but it becomes mentally draining on one's spirit. Supporting researchers to find a cure is so important to the wellbeing of cancer survivors. I beat cancer, help me beat lymphedema!×
04/08/2020 - Meadville, Pennsylvania
The first thing I noticed, as a teenager, was that my hips were bigger than normal & my legs were shapeless. At 17, I sprained my rt ankle and the swelling never resolved. Fast forward 37 years to age 54, & I was dx'd with both Primary Lymphedema & Lipoedema. My hips and legs are still disproportionately big. It is hard to buy clothing, and my compression garments are hot & unsightly. I must always explain my ugly garments ( stockings) and why my diseases never will go away. Early diagnosis & treatment is KEY for management of both of these diseases - not a 37 year wait! Thank you.×
04/08/2020 - Springfield, Illinois
I was an eight month baby and lived with constipation my entire life. Nine years ago, at the age of 64, lumps started appearing on my legs. Home remedies seemed to keep them under control. Then my mother died four years ago. After getting home from the one day wake and funeral in Chicago my legs had swollen like balloons and were weeping liquid like a waterfall. A trip to the ER got me admitted to the hospital for a three day stay. After first telling me my heart was strong they later told me my heart was the cause of my problem and I needed heart surgery. Because of the discrepancy I sought a second opinion where I found the correct diagnosis to by lymphatic disease. That doctor, an internal medicine physician, helped me quite a bit but got to a point where he could do no more for me. I have not been able to find another doctor who can help me and my legs are again swollen to the point where walking is close to impossible. When I seek help from local doctors they check my heart, find it OK, then tell me there is nothing wrong with me. It is terrible being sick and nobody recognises the disorder. That should neaver happen in a town with a major medical school. Someone needs to help me before it is too late.×
04/08/2020 - Jefferson, Georgia
Greetings, My name is Pastor Ramon Dorta, In 2009 I traveled to Peru and contracted a meat-eating bacteria which, through bad practice, completely destroyed my two arms. This bacterium at the same time ate all my muscles and lymphatic system and every time I go to medical emergencies they do not know how to work with my case since I am the only existing case. I currently live in Georgia and I am a Christian Pastor from the Hispanic area. My # (787) 907-2424 and email: firstname.lastname@example.org.×
04/08/2020 - Dunedin, Florida
I've had secondary lymphedema for over half of my life. But since I only had a 5 yr life expectancy, after melanoma surgery, I feel lucky! That is, until I get the stares when I'm out in public. Or the little kid who points at my leg and asks mommy "what's wrong with her leg?" And then there's trying to buy clothes? Let's not even go there! Lymphedema has caused me not only pain, discomfort and embarrassment, but it severely impacts my mobility, my self confidence and the forming of relationships. And since my insurance company will NOT pay for my compression garments or lymphatic treatments, it's also financially draining! My primary doctor knows nothing about the treatment of lymphedema, and there are very few who do, given the lack of training given to medical professionals. So, let's change that! Let's work together to get lymphedema and lymph diseases taught in medical school! Let's educate insurance companies on the necessity of compression garments and lymphedema therapy and demand they cover treatment! Let's pass some comprehensive bills in Congress that gives as much money to lymphedema research as other debilitating diseases! And yes, let's find a cure!!×
04/08/2020 - Baltimore, Maryland
What really sets me apart from other women - normal women - is my shoes. Most women my age have a substantial collection of footwear for every occasion: different colors, patterns, heights, styles. Fancy. Basic. Athletic. Choices.
I own one pair of slip-ons.
Years of damage from stagnant lymph created a cuff above my ankles, making it impossible for me to wear ordinary pumps or flats.
And there isn’t anything I can do about it.
No exercise, pill, diet, surgery or therapy can reverse the damage caused by decades of untreated primary lymphedema.
Symptoms were present when I was a child, but were usually dismissed - or a diet was prescribed. I only received a definitive diagnosis in my late 40’s, but by then, the damage was done.
Treatment was assigned: compression, compression, compression! Otherwise, I’m resigned to living with this exhausting, embarrassing, sometimes-painful-but-always-misunderstood condition.
Thanks to LE&RN, there’s a chance that lymphedema and related conditions will be (cured?) (eradicated?) (understood?) in my lifetime. I support LE&RN’s efforts, contribute what I can, pray. Now I’m asking Congress to increase funding for research.
What would you do if you were in my shoes?
04/08/2020 - Kensington, Maryland
In 2013, our family’s life changed dramatically. My 9 year-old daughter Sarah’s ankle swelled dramatically. A scintigraphy at Children’s Hospital, DC. confirmed she had primary lymphedema–no lymph node activity in her right leg and foot.
The DC specialist gave no guidance so we got a second opinion three month later in Cincinnati. We learned that lymphedema is a chronic condition, maintained through MLD and hose.
Sarah has hose, a night garment, and a pump she uses nightly. Her right leg looks double the size of her left.
Sarah has lobbied on Capitol Hill for the Lymphedema Treatment Act (LTA). She inspired a bill for Maryland Insurance to cover compression garments that became House Bill 847. She was nominated as a Rare Disease Teen Advocate in 2018.
In 2018, my older daughter Hannah’s left leg looked swollen the day before a vacation. At home, her diagnosis of primary lymphedema was confirmed. Recent testing shows Hannah has no lymph node activity in her left leg and foot
Our family lobbies for LE&RN and the LTA. Hose and massage just maintain the disease; they don’t cure it. Lymphedema takes a toll on self-esteem, quality of life, and can lead to death. Education, research, better insurance, and eventually a cure are imperative.
04/08/2020 - Ocala, Florida
At age 55 I got lymphedema of my left leg, came on just suddenly. I have had this for twenty years now. My left leg is of course bigger than my right leg so have to buy a special stocking, which is costly, and must have a prescription from Dr. to get them. Also buy leg wrappings and gause to wrap the leg, of which Insurance covers none of it. Just take care of leg daily, if not it swells, aches and leak fluid.
A cure would be awesome, so many people are enduring much pain, malformations, and expense. P. S. Shoes are hard to find when one foot is bigger than the other. Thank you for your time.
04/08/2020 - Meadville, Pennsylvania
When I went through puberty, I became "hippy" and had legs that were different than my friends, very straight and shapeless. At 17, I badly sprained my right ankle, and the swelling never resolved. Fast forward×
04/08/2020 - Elmira, New York
A little bump on my ear led to metastatic squamous cell skin cancer and resulting is radical neck dissection, removal of 79 lymph nodes, radiation and chemotherapy. The loss of hearing was taken care of by a hearing aid. The quality of life issues of having to do manual massage, compression garments, and pneumatic pump nightly and physical therapy by a certified lymphatic therapist 45 minutes away and the time spent doing these have changed each day and will for life. In addition, I have leaking of fluid, swallowing problems, and issues of physical appearance. These will be with me for the rest of my life and since little research is done on neck cancer and lymphedema there has been little help so far. Please help now.×
04/08/2020 - Elmira, New York
A little bump on my ear led to metastatic squamous cell skin cancer and resulting is radical neck dissection, removal of 79 lymph nodes, radiation and chemotherapy. The loss of hearing was taken care of by a hearing aid. The quality of life issues of having to do manual massage, compression garments, and pneumatic pump nightly and physical therapy by a certified lymphatic therapist 45 minutes away and the time spent doing these have changed each day and will for life. In addition, I have leaking of fluid, swallowing problems, and issues of physical appearance. These will be with me for the rest of my life and since little research is done on neck cancer and lymphedema there has been little help so far. Please help now.×
04/08/2020 - Colorado Springs, Colorado
I am a 40 yo female and have congenital Lymphedema of the left leg. After my birth, my parents were told I would likely die or at least that I would never walk. I didn't die and I can walk, run, and jump. I have been seen by medical professionals from the Mayo Clinic and the University of Minnesota. After years of exploratory testing and surgeries, I was finally diagnosed my senior year in high school. At that time, I underwent Lymphatic Massage Therapy, which helped to control the swelling but unfortunately became cumbersome, time consuming, and did not fit my teenage lifestyle. In the 22 years since, I have only managed my Lymphedema with compression garments. Even still, at the highest level of compression, the garments do not adequately control the pain, pressure, and swelling. The level of fear attached to a Lymphedema diagnosis is also prevalent in my mind. I am very careful with my leg to ensure I am free of clots and cuts. To me a cure would mean freedom from swelling, pain and fear, a heightened level of confidence and self-esteem, and a reduction in other medical issues possibly related to my Lymphedema.×
04/08/2020 - Standish, California
My son Lane was born in 2006 with a diagnosis of fetal hydrops, which is fluid everywhere. The neo-natal doctor told us they could keep him alive 3 days. Miracles happen, he is 13 and a half now but when we left the NICU there was no diagnosis just suggestions of doctors to visit. One of those suggestions was a lymphatic specialist. After three months of searching I found a doctor to take my baby too. His office was 7 hrs. away. He has been a literal life saver. He gave us compression treatment options and dietary restrictions but said there was no research or money in lymphatics so there wasn't much to look forward too. All the compression equipment, orthopedic shoes etc. were not covered by insurance. Lane has been in out of hospital with pleural effusions, paricardial effusions and has had two major lung surgeries and countless draining procedures from the edema and fluid. The infusions he takes now cost $350 a month after insurance. Lane is a lively boy trying hard to breathe everyday. Finding a cure would mean a new and better life.
04/08/2020 - Berkeley, California
It will be two years in July 2020 that I have lived with Lymphedema. 6 weeks after surgery I was on a hot hillside with a potential client for landscape design. Got home, looked down, my whole right leg was huge. My Surgeon really was not much help except that I needed a physical therapist. The one she recommended was out for 3 weeks so I tried my GP and he referred me to one that had only her hands to drain, no advice etc. Kept searching found a clinic that had more resources and helped quite a bit and finished the sessions gave me a machine with a sock that inflates. But my own research helped the most, swimming, herbs, low inflammatory diet get the best results. It has been very difficult to learn this is a progressive disease I will have the rest of my life. It has forced me into premature retirement, as a landscape designer, both being in the field and in front of a screen is detrimental at a full time schedule. I can't earn and I need to.So I am living with financial stress, stress of managing my every day, that when I wake up and stand, it is countdown for when it swells I have to wear and pay for out of pocket expensive compression garments that limit me in hot weather, you get over heated swelling occurs .It has dashed my dreams and plans of travel (I am life long traveler).Emotionally that has been one of the hardest realizations and a big part of my identity.×
04/08/2020 - Olean, New York
I was diagnosed with Breast Cancer in Sept 2016. I had a right mastectomy and right axillary dissection.
In January 2020 my right hand, fingers and arm started to have swelling to the point my shirts were tight on my right arm and a lot of tightness, heaviness and pain in my hand and arm.
I went to see my Oncologist and she recommended Physical Therapy, however there is no one trained within 2 hours of me for lymphatic drainage. I'm in desperate need of a cure for Lymphedema..
04/08/2020 - Wilmington, Delaware
I’m Kathleen Mulligan. I developed Lymphedema in 2015 from treatments for Ovarian Cancer in 2010. Before that, I acted full-time for 30 years, on stage, in television, film and commercials. I traveled, worked on new projects all the time, met creative people and used skills I had spent a lifetime honing. I supported my family, was active in my community, and even did the Avon 2 Day Walk for Breast Cancer nine times! I was a crew leader for Habitat for Humanity. I taught creative dramatics to children to share the joy of acting. In 2015, that all ended. My leg swelled up to 3 times its size, I was completely sidelined. It took months to diagnose me and another year to find proper treatment. I have Physical Therapy 2 hours daily and wear compression 24/7. I can’t work as an actor and can’t do the physical things that I used to enjoy. I am told there is no cure for Lymphedema. I don’t believe that. Millions of Americans are held hostage by Lymphedema. Please support research for a cure to free us from this captivity and allow us to live our best lives again.×
04/08/2020 - Washington, Pennsylvania
I was born with lymphedema (Milroy's Disease) in both legs and feet as were my two grandchildren, ages 4 & 5. My right leg/foot is worse than my left. Lymphedema is horrible. Emotionally, for me everyday it separates me from others. I was made fun of as a child. Adults and children stare at me. My personality has been shaped by this disease. I try and just hide my legs and feet, they are unsightly. I wish I was stronger. I can't imagine NOT trying to hide who I am. Actually, someday in heaven I won't hide. I will be free. Physically, I struggle with pain, swelling and just hardness in my feet, legs and ankles that I can't explain. I have fought MRSA and almost lost my toe. A cure would set me free emotionally and physically!!! It would give me peace knowing my grandchildren would not have to live my life. A cure would mean hope, maybe not for me (I'm 56) but for future generations. There are no words to describe what a cure would mean ... just writing this I feel emotional ... just tears of joy. A deep gratitude in my heart. Freedom. Please Congress, help all of us who suffer!! Thank you!
04/07/2020 - New Orleans, Louisiana
I had uterine cancer, and following a total hysterectomy, radiation, chemo, and several lymph nodes removed, I ended up with Lymphedema. No one had mentioned this condition as a possible side effect, even after observing the swelling in my legs. When it was finally diagnosed, I realized there is no cure! Cancer gone, Lymphedema here for the rest of my life! I now, following PT treatments and bandaging, I was told three times that I had contracted cellulitis. And three times following antibiotic treatments, the doctors realized that it wasn’t cellulitis but rather a skin issue due to the treatments. Long story short, not enough is known about this condition nor are we, the patients, told about the possibility of having this condition beforehand and what to look for. At least that way, I could have started dealing with this condition earlier. It has affected my clothing and shoes that need to fit over my leg and feet, which stay swollen all day, everyday! I use compression stockings all day, use a leg pump for one hour every night, and go to bed with a cushion leg sleeve ( toe to thigh high) all night.
Please help us help others. There are really no seriously good options for us once this condition is diagnosed.
04/07/2020 - Coralville, Iowa
I am a Lymphedema Nurse Specialist. I have seen this disease disable and destroy patients lives. I have seen the sadness in patients eyes when they are told their insurance won't cover the diagnostics, the therapy and garments, or the surgical interventions to help them. None of these patients asked for this disease, it is secondary to cancer treatments or primary lymphedema that they have no control over. As a nurse we need to do better! We need more education and more research. This isn't a disease that should be ignored. Let's move forward, don't be oblivious to this disease! Let's be proactive!×
04/07/2020 - Bulverde, Texas
I have neck lymphedema secondary to throat cancer diagnosed 2019. What a shock it was to learn that the pump which is would help manage is not covered by Medicare. If only I had been diagnosed with Lymphedema one month earlier when I had private insurance through my employer it would have been covered. In my job I worked daily with Lymphedema patients never dreaming I would be one. It is a life changing diagnosis and is always with you. There needs to be more funding for research and more education for physicians and medical students so early diagnosis can be achieved. I was lucky to have a physician that recognized I was in the early stages.×
04/07/2020 - Danville, Pennsylvania
I'm a human being that was born with primary lymphedema second to Turner's syndrome. I have lived my life with all the complication of this swelling, seeping of lymph fluid out of both legs, and complication from having in my bowels. When trying to get some treatment ,doctors state don't know of this.please help .×
04/07/2020 - Spanish Springs, Nevada
I am a breast cancer survivor and I live with Lymphedema every day since my breast cancer surgery four years ago. Managing Lymphedema is my full time job, every single day, with no time off for holidays. It is not something I ever signed up for or would want anyone to ever have.
Lymphedema affects every aspect of my life, every single day. It makes being a Special Education teacher for 35 years look like a walk in the park and a piece of cake, all rolled up into one!
Being that my glass is half full, never half empty AND having a tremendous amount of resilience and perseverance, I started a Lymphedema Support Group in Reno, Nevada to help others stricken by this horrific disease. We meet monthly and have guest speakers on timely and pertinent topics relating to Lymphedema. My goal is to have Kathy Bates as a guest speaker one day. She is my hero and inspiration that I can do this and deal with Lymphedema every single day of my life.
A cure for Lymphedema would mean that I, like many other Americans, would get my life back. I believe a cure is attainable in the foreseeable future...it cannot happen soon enough for me and so many other Americans.
04/07/2020 - Lake Wales, Florida
I was diagnosed with lymphedema at 49 over 20 years ago. I was very active before and I walked 3 miles a day. I was lucky to have good insurance and was able to have compression stockings, wraps, nighttime wear, and also a compression machine. I Have had many infections and hospital stays, of which I had kidney failure and was septic. I am now on penicillin daily so that I don’t develop any more infections and DIE.
My main reason for writing this is
not only for myself but for all the people that have this extremely debilitating disease and have no insurance. Therefore if they cannot afford all the garments that insurance pays for they are shortening their life span and they
are losing a lot of good life quality.
Before I had lymphedema I had a great healthy active life. Now I can barely walk out to the street and back and I have to sit down. I can’t go shopping, bowling, golfing, etc. or any of the fun things I did before.
Please work on a cure and include in Medicare the garments needed for people with lymphedema to keep the swelling down.
People are getting worse everyday because American government won’t take care of there tax paying citizens.
04/07/2020 - Veradale, Washington
Our daughter in Arizona has this horrible disease in both legs! A younger vibrant hard working gal now ready to go insane and on anxiety and depression meds!
She lost her job as can't hardly walk at times.
State insurance wont pay for the Physical Therapists that she needs to work with to understand lymphedema and learn what to do to ease the pain.
Amanda applied for disability, but that can take a very long time she was told.
Experts state there is no other disease affecting Americans so much and yet this receives so little attention. Washington state doesnt even recognize March 6th, which is world lymphedema awareness day!
04/07/2020 - Collinsville, Connecticut
When I was 12 years old, one of my ankles was swollen. Fortunately for me, after ruling out any other possibilities, I was diagnosed with primary lymphedema. say 'fortunately' because I was to learn later how long some people live without a diagnosis. Soon after, my other ankle swelled as well, and I have managed my progressive condition by wearing compression stockings for the past 40 or so years. I was extremely self-conscious of my looks as a young woman, and, I believe that this adversely affected and delayed my social development. Only with the advent of the Internet and research organizations such as this one, have I been able to 'tell my story' - because this became the only way I have even understood 'my story' myself - and the only way I have been able to tell any doctor about it, not one of whom knew about it before meeting me. The financial hardship has been substantial - and yet, because it has always been there, somehow, I have always 'budgeted' for it. That was the status quo until 2016 - when for two years, I fought 5 successive bouts of cellulitis, 3 of which required hospitalizations. None of those were in the budget! The condition is progressive, and I am getting older. I can only hope that when I become eligible for Medicare and am on a fixed income when I retire, that I will be able to receive adequate care and treatment. Please vote YES!×
04/06/2020 - Quincy, Massachusetts
In 1988 I was a nurse in a large, Harvard-affiliated, Boston hospital. A physician said, "Your right leg is swelling, I don't know why...take these water pills, it will help." It didn't. It was 20 years before I found a clinician trained in lymphedema therapy and treatment. I've lived with this disease in my leg for 32 years. THIRTY-TWO YEARS. With every decision or choice I make in life, the very first thing I consider is the impact it would have on my leg. This is second nature to me now, like breathing. Many with lymphedema are disfigured/disabled and are unable to live a normal life. Social distancing and isolation aren’t new for them, they’ve lived with it for years. Despite tremendous advances in many areas of medicine, the fact remains that in 2020 the only thing I can do to move lymph fluid out of my leg is to literally wrap it daily with several layers of bandages – unbelievable. This is just my story. There are millions of others. Let’s find a cure together, I’m happy to help. I'm currently working at Mass General Hospital, a battlefield for COVID-19, and so proud to be a nurse. Thank you.×
04/05/2020 - Conroe, Texas
I am a 16-year-old sophomore in Texas. The impact lymphatic malformation has had on my life is dramatic, because it not only has impacted me, but my family as well. I was born with macro cystic and microcystic cysts in my neck, jaw and tongue. I have had 8 surgeries including a tongue reduction surgery where they cut 7 millimeters out of the middle of my tongue and sewed the two sides back together. I also had some of the tip of my tongue removed. I continue to experience tongue swellings randomly. In fact, as I write this, I am swollen and in pain. There is no cure and it is hard not be very mad and frustrated that there is currently NO MONEY being put toward research for a cure for lymphatic malformation. Lymphatic Malformation also effects my education, my social life and my emotional state.
A cure would mean the world to me and to the thousands that suffer from lymphatic malformation and lymphatic disease. We are a large community with nowhere to turn and I would literally do just about anything to help find a cure. I am trying desperately to raise awareness and research money.
04/03/2020 - COLORADO SPRINGS, Colorado
My journey started around puberty with lymphatic diseases. I went misdiagnosed for almost 20 years before I became my own advocate and wouldn't just take "you need to eat more salads" as the answer for why my legs were getting exponentially larger than the rest of my body. I dove head first into all things "lymphatics" as soon as I found an answer for why my legs were getting larger, heavier, and had infections that couldn't be addressed by simply eating "more salads." I was honored to speak with the CEO of the American Medical Association in 2016 to make him aware of how we desperately need the upcoming doctors to learn more about the lymphatic system. I have helped raise over $48,000 for research into lymphatic diseases; but I soon found out that there is so much more needed for others like me. Unfortunately, insurance doesn't pay for most of the therapy, medical garments that I (and others like me) NEED to control these lymphatic diseases. There are NO other options for anyone like me dealing with lymphedema and lipedema other than physical therapy and garments. This is UNACCEPTABLE! I plead with Congress for myself and other lymphatic patients to help us to find a CURE for these diseases! You would want the same for those you love! We just want the same chance to live without deciding between groceries and medical care for these diseases we NEVER asked for; but were gifted.×
04/03/2020 - Southport, North Carolina
Lymphedema cost me my career of 25 years in the Coast Guard. My lymphatic system was damaged during a simple medical procedure which almost ended my life. The damage caused me to start gaining weight which was presumed to be fat, but was fluid building in my tissues. Due to the lack knowledge of the lymphatic system and what happens when it is damaged, I was administratively punished for “being overweight” while I was in the battle for my life. The honor I worked to achieve was significantly diminished. I was treated like I had suddenly become lazy and fat. For years I fought to have the test that proved my lymphatics were damaged and a statement, “We finally see what you have been trying to tell us.” And yet, that only helped with a diagnosis. No one had any idea what to do with me. I was medically discharged from the Coast Guard. For 15 years, Lymphedema has caused me to miss out on creating lasting memories with my family. My condition seriously limits my physical capability. A cure for lymphedema would help restore my honor, give me my freedom back and a new future to look forward to.×
04/01/2020 - Mahopac, New York
Connor was diagnosed with a rare lymphatic disorder at 6 weeks old. We were told there was no cure and minimal research about it. Connor has been hospitalized hundreds of times, for infections, low immunoglobulin levels and the reasons go on and on. When your child is known to every Doctor and Nurse in the hospital it is comforting he will get the care he needs, but also terrifying.
Connor has raised money for research, stood on the Senate floor telling his story and shared his story to the world. Research would mean a cure. A cure would mean no more infections, no more hospital stays, no more restrictions, no fear of losing your leg (due to infections spreading to your bones) and not being able to do what you love.
At 13 years old, Connor has overcome and fought harder than any individual I know. He vows to find a cure for all suffering from lymphatic disorders and urges you all to help him!
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