"Lymphedema Has Destroyed My Quality of Life" by Alex Lord I used to be a professional dancer, traveling internationally and performing in other countries. October 1999: Diagnosed with uterine cancer, I was given 8 views of radiation on a daily basis and chemo 3 times a week. Cancer treatments severely damaged my lymph system and created the lymphedema I’m now struggling....

I'm 59 and have been living with lymphedemia for more than 20 years. Currently I am in n a facility because I haven't been able to walk for almost 2 years. I get cellulitis often and the facilities I've been in don't treat lymphedemia. I've got the velcro wraps, the pumps, a vibration plate and not one place....

At 14 years old I was at dance practice and noticed my leg was swollen. Knowing that I had not been injured I quickly became concerned. After months of doctors saying it was a sprain from the athletics and dozens of tests later, I finally went out of state to CO Childrens Hospital where they diagnosed me. Teenage embarrassment quickly swept....

In 2010 I had a knee replacement. I had a blood clot to the lung, but I lived through it. In 2013 I had a filter placed so I could have the other knee done. I did fine for 3.5 weeks until my left foot (on the leg that the knee was replaced) swelled up like a tree trunk. Three to four days....

Recent diagnosis. I am over 2 years out from left mastectomy and diep flap reconsrtruction. My arm began to really hurt after Covid in Nov 2020. I went rounds of Dr's visits, 2 TIA admission to hospital for both times. Saw orthopedic for shoulder pain, 2 steroid injections and second one helped. I then followed up with Plastic Surgeon and they suggested therapy....

I was about 17 when I began to notice swelling in my right arm and leg basically the right side of my body. It took several years and finally going to the Mayo Clinic in Rochester NY to be diagnosed. They sent me home with a pump for my arm because that’s always swollen my leg swells when I....

I am 52 and was diagnosed with Lymphedema 10 years ago but I have had it longer. My doctor just told me it was because I was overweight and worked on my feet. I have had cellulitis many times and was hospitalized once for a week because I almost went septic. My lymphedema is in my left leg from my knee to....

Wow, I feel like I've been working on a room-sized picture puzzle for decades and finally beginning to fill in those stubborn missing pieces. I'm not officially diagnosed (yet) but I now know... IT HAS A NAME!!! Lymphedema. LE. I'm almost 64 years old and I guess it started about a dozen years ago in earnest, though....

Prior to my breast cancer diagnosis in 2018 I was considered exceptionally strong and healthy for my age (56 then) by my friends and family. Ironically, just weeks before that fated mastectomy my younger sister had said to me, “You will outlive us all.” I am the oldest of five. At that time I was also a full-time special education....

HI, I have been living with Lymphedema for 56 years. I was diagnosed when I was 11 years old in 1965. At the time it was dominate in my left leg. When I left the Children's Memorial Hospital, after 5 weeks of tests, they told me the blood clots in my left leg were caused by Lymphedema. When I arrived at the Hospital....

Ok, this is gonna be long. I'm 33 years old and both I and my mother (I think at least!) have either primary lymphedema or lipedema, but I believe for both of us it has progressed into lipo-lymphedema. I've had symptoms since puberty but it only really got bad within the last 10 years or so. My poor mother's....

One November night on 2011 I was at the gym and I noticed my right leg was swollen. I was 42 years old and working out regularly. Even though I was a life long fitness devotee I had arrived to a point where I was feeling like I was in the best shape of my life. My primary doctor had me make....

I am 32 years old and about 8 years ago I noticed swelling in my left foot. I thought it was an injury from spin class so I went to the podiatrist that sent me for an MRI that determined I had a pinched nerve but pinched nerves do not cause swelling. She did some steroid injections and also put me on....

I have dealt with lymphedema since the onset of puberty. My legs swell everyday. I wake up on good days and I can see my ankle bones. By noon they are both so swollen I sometimes can't put on shoes. I have gone to the Mayo Clinic and to many other doctors. One doctor told me I just....

I was diagnosed with lymphedema one and a half years ago after a stage one cancer in my breast was removed. The doctor insisted on removing two lymph nodes. On my one week checkup she informed me she accidentally took six lymph nodes/ I now have lymphedema in my right breast, my torso, and my entire right arm and armpit.....

I was diagnosed with lymphedema when I was 6 months old. I have it on my right arm and hand. My doctors told me they didn't know a lot about it and I was given some tools to manage my condition. I am now 32 years old and not much has changed in terms of progress in treating lymphedema. I have....

I have been living with lymphedema since 1997. Let me fill you in. In 1997, I was injured on the job in a veneer factory. My hair was caught in a conveyor belt and I was "scalped" literally. Doctors tried relentlessy to reattach my scalp by taking a major vessle from my right thigh and transplanting it into my neck to establish....

I developed a DVT in my right leg during chemo for lymphoma in 1998. Age 37. In 2017, I had an unprovoked recurrence of the DVT. The clot was from ankle to groin both times. Since 2017, I have developed lymphedema as a result of 2 DVTs. I now have pretty significant swelling of the entire right leg, and some swelling even in the pelvic....

I have been suffering from edema, cellulitis, and now lymphedema since 2013. It is depressingly painful every day. I deal with it but the inflammation is worsening. I have open cysts on my ankles that are taken care of at the Wound Center. l have a nurse who comes to see me twice a week to keep the sores clean and....

i was 17 years old giving my annual exams in Saudi Arabia and was packing my stuff to move from KSA to Pakistan. One day in morning I woke up and saw my foot swelled just thought its gonna go as its not a big deal I was so busy with exams and packing my stuff that I forgot to go....

I have been living with lymphedema for 30 years. Symptoms started when I was 8 years old but I was not diagnosed until I was 33. My left foot, ankle and part of my leg are swollen. Most of the swelling is in my foot and ankle.

Three years ago, at the age of 26, I noticed a lump on my neck that slowly started increasing in size. I went to three or four different doctors who all thought it had something to do with a clogged lymph-node. It continued to grow and felt squishy so I had it drained countless times, but it would come back after....

I'm an elite distance runner from Australia. Australian 30+ age group champion over many distances. Have won nimerous major fun runs, and hold park run course records. I am now 36 years old and have been living with a lymphatic issue in both legs for about 7 years now. First noticed fluid retention in both legs during a gym session 7 years ago.....

I have been diagnosed with lymphedema,and lipedema. Lipedema is a chronic medical condition characterized by a symmetric buildup of adipose tissue (fat) in the legs and arms. The adipose tissue is different from regular fat. It is immune to diet and exercise. Lipedema is usually confused with regular obesity and lymphedema. I am glad I received a diagnosis in 2016.....

I have secondary lymphedema in my left breast, underarm, torso, and upperarm after a lymph node biopsy surgery on April 18, 2019, a date and event that I truly regret. I went through the lymph node biopsy surgery against my better judgement and at the behest of my surgeon, only to later find out that studies have shown that stage 1 breast cancer....

I was born with lymphedema in my entire left arm and hand 65 years ago. I do most everything everyone else does. My fingers are fat and I have less dexterity in my left fingers and hand but I have lived with it a long time. No cure, no change.

My experience with lymphedema is with my 8-year-old son. When he was 9 months old I brought his leg swelling to the attention of his pediatrician. She misdiagnosed him, calling his condition hemihyperplasia. It wasn't until about a year ago that we found out through an MRI that he has primary lymphedema of his left leg, pelvis, and genitals. He....

Hello All - I was diagnosed (after much uncertainty) with lymphedema in my right leg at the age of 16. Doctors rarely had answers and told me there was nothing I could do but maintain it. A wonderful rep from Tactile actually gave a great lead- to Doctor Dean at OSU, who has advocated for me and helped me tremendously. Now,....

I had soft tissue (bladder) cancer in 2009 and 2014. In 2014, my bladder was removed along with other nearby organs as well as lymph nodes in my lower ab area. I went into the hospital weighing 129lbs and came out 14 days later at almost 180lbs. I couldn't get my clothes or shoes on to leave the hospital. I wore my hospital....

When I get down or am in lots of pain, I write poetry to cope. HOW DARE YOU How dare you say I’m weak, That I should “walk it off”, That I’m lazy, worthless or hopeless, How dare you look, point and laugh, Stare at me with pity, disgust or disdain, How dare you....

I am Betty. I am 27 years old and from Kenya. My illness started in January of 2017. That's when I started feeling pain on my left foot and went to clinic. They gave me some tablets and wrapped my leg because they didn't know what the problem might be. After a while my leg started swelling more and....

It Takes a Team to Prevent Bilateral Lymphedema, by Sharon S. Shepard My medical team didn’t want me to worry about lymphedema when I was diagnosed with bilateral early-stage breast cancer in 2017. My surgeon had read about a study that closely associated lymphedema with obesity, so other prevention methods seemed unnecessary if I stayed thin. A nurse told....

My husband Jack has lymphedema. In 2011 we noticed that his legs would swell up a little then go down, causing some discomfort but he still managed to walk around. As the days, months, and years passed, his swelling got worse. When we asked our doctor about the swelling. He was a little shocked at how swollen....

I am a military veteran and have really bad knees. I went to Kaiser to find out why it was getting harder and harder to walk! I couldn’t bend my knee so I agreed to have arthroscopic surgery! My knee cap was off 3/4 of an inch. I needed a lateral release and a meniscus fusion! Then my entire....

Hi, I am Anne Kimani, 49 years old, and from Kenya. I was diagnosed with lymphedema of the right leg in 2003. Unfortunately, in this part of the world, most people, including a number of doctors, do not seem to understand much about this condition. Sometimes the pain is unbearable we with a lot of burning sensations besides the heaviness. This has....

I was diagnosed with breast cancer January 15, 2017. After 4 surgeries and 6 weeks of radiation, I thought the worst was over. Needless to say, I was wrong. I started noticing swelling and pain in late 2017. My doctor sent me to a physical therapist specializing in lymphedema. I was fitted with a compression sleeve and treated at least twice a week. The pain....

I was 14 when I noticed my ankle was swelling after playing basketball and, despite doctors appointments, tests, and physiotherapy, it did not go away. About 8 months later, the other ankle swelled and I was on my way to see a specialist who diagnosed me with primary lymphedema. There was one or two paragraphs of information on it and NO support....

we support world lymphedema day from İSTANBUL-TURKEY

It took years till I was diagnosed. I believe I had lymphedema since the beginning. It would explain an incident I had when I was young on the playgrounds. So, we were playing hide and seek. I was running down the stairs and I fell. I couldn’t feel my right leg for a couple of hours. Years later....

My story started about 12 years ago when I had to have major surgery for my celiac artery. It was 85% blocked. Anyway, after I woke up from the surgery my legs and arms where so huge I couldn't even get out of bed and, of course, the surgeon said that it was impossible for the surgery to have caused....

I developed lymphedema in my lower left leg as a result of a quite aggressive bout of cellulitis. Consultant thinks it may have been brought on by a bite while at a Wedding in Cyprus. Anyway, I have a very grossly affected lower leg. Two years later my friend cellulitis paid a visit to my right leg, but as I....

Hello everyone. I SUPPORT THE WORLD LYMPHEDEMA DAY!! It is so important that doctors know the disease and especially know how to help us. It is also important that patients know how to deal with the disease and know all aspects of self management. I have lymphedema in my right leg since 2006 after being operated and treated with chemo and....

Hello. My name is Leigh. I am 60yrs old. I have lymphedema in both of my legs. No cancer. I also have pretibial myxedema. Neropathy. And no support. I am unable to help with getting to therapy. And buy my bandages to wrap my legs. What I did have was stolen. I've recently become homeless and my struggle....

My Mom was a warrior, a fighter to the end. After a diagnosis of metastatic breast cancer, she made it her job, her goal to live a meaningful and productive life. Lymph nodes were removed, and it would be years before the swelling would begin. Something we had no idea was coming. The truth is, and I only lived through....

My story begins in Jan 2015 when I was diagnosed with Triple Negative Breast Cancer. I had a double mastectomy, chemo and about 5 surgeries before my first left arm developed lymphedema. Oct 2015. I noticed my arm was swollen. My primary told me it was lymphedema and sent a referral in for physical therapy. I looked up lymphedema and watched a....

Madelyn Grace was diagnosed with primary lymphedema when she was about a year old. She was born with swollen feet and hands at birth and is now undergoing occupational therapy along with wearing special garments. It is not an easy adjustment that takes getting used because we hate seeing her go through this. It's not easy as a mom....

My story starts in 2004. I had just finished a 30k race days before that was my best running performance at 42. I noticed on my daily run 3 days after that something was rubbing under my right arm. I reached up to find a baseball size mass under my arm. I immediately called my Gynecologist and he said I needed to come....

I am a cervical cancer survivor who has developed lymphedema in my left leg shortly after surgery and treatment. I am now part of the California chapter for LE&RN.

My daughter Brylan was born on Christmas Day and was sent home from the hospital as a healthy baby. A few weeks later, my sister noticed that Brylan's foot seemed a little swollen. At her one-month checkup, her pediatrician also seemed concerned and thus began our journey for a diagnosis. I was continuously told to "wait and see" or ....

My daughter Sophia is currently six months old and was diagnosed with Turner Syndrome at two months of age. We noticed in May that her hand and foot had started to swell. I mentioned it to her endocrinologist who did not take it seriously. My husband and I were told that she would outgrow her lymphedema by age two. ....

I started out with Lymphedema in my right leg in 1997 due to a radical hysterectomy because I had cervical cancer. Doctor removed 16 lymph nodes on my right side of my pelvic and and seven on my left. I underwent radiation therapy and chemotherapy. The swelling started almost a year after my surgery in 1996. No doctors at the hospital I was....

At the age of 12, I developed Lymphedema. At the time I was living in California and I believe I caught it from a parasite infection. It started in my lower foot and ankle then went to my right foot. I was scared and unaware. I told my Mom. She took me to the doctor where they performed several tests and....

My story of lymphedema begins with the birth of my son. My son Dusan was born with lymphedema in both legs. The diagnosis was established when he was eight months. Due to the lack of education on lymphoedema in our country Bosnia and Herzegovina, we were forced to take our son to the other two countries to establish a....

Nothing prepared me for the journey I was about to take on November 16, 2017. For the 2nd time in less than 5 years, I heard the words so many hear, "Your cancer has recurred " I had a total thyroidectomy in February 2013 and no lymph nodes removed. Each year do my I-131 radiation, with the whole body scan a few days later.....

I was 38 weeks pregnant and a health nut wanting my baby to have the best start possible. I craved fruit and was blessed with an easy first pregnancy (minus the morning sickness) and at a weekly checkup when I demanded my doctor confirm my daughter's positioning. I had a gut feeling she was breech and I couldn't drink....

For years I dealt with this dibilitating disease and did not know what it was or where to get treatment, but thanks to Heart House NJ and a company called Care Point Medical Solutions I am now recieving treatment. And becoming more mobilized.

I have stage 4 Ovarian cancer. I developed a lymphatic reaction to my cancer in my lower extremities. It is around left side from the hip downwards. It is connected to my metastatic cancer and is apparently a common way for Ovarian cancer to spread. I am currently being treated for the cancer with chemotherapy but it isn't doing much....

I been living with lymphedema since 1987. It was life changing for me. I really couldn't believe what was going on with me. I was made fun of as a kid and growing up. As a adult, what changed my life was connecting with LE&RN and attending the Walks. Through social media, it....

After visiting 4 doctors for pain and major foot swelling, an orthopedic surgeon told me you need to see a lymphedema doctor because you have lymphedema. Six years later, I'm dealing with primary lymphedema in all my limbs. It has been hard to tell certain doctors, like my ob-gyn, that I have lymphedema, only to hear: "No, you just carry....

I have been dealing with lymphedema for 15 years. It has turned my life up side down. It has caused me not to wear the things. I use to like to wear dresses and heels. My life has did a complete turnabout. I really didn't know what was going on with my legs. I was just trying to deal with....

I have been dealing with this since 1997, as a result of a mastectomy in 1995. So over the years I have had many forms of treatment. I deal with chronic pain in the arm and now have been asked by a pain management doctor if I might like to try spinal cord simulation. I have never read of this concerning the....

I have been dealing with lymphedema for about a year now. I was diagnosed after having undergone bilateral mastectomies for breast cancer. This is not something I was expecting nor was I warned about the risks of it becoming an issue. I am now dealing with bilateral lymphedema of the arms and hands as well as thoracic lymphedema. I do....

After seeing many doctors and specialists from age 24-26, I was told I was born with lymphedema. I have to custom-make everything that I wear for clothing and shoes too. My lymphedema is mostly in my legs. I have open wounds on both legs and there have been times I have been sent to the ER for "weeping," which is....

I was 29 and on my way to a work Christmas party, when I was hit head on in a MVA. After 1 year in the hospital, 16 surgeries, 1 coma, 1 stroke, and teaching myself to walk 5 different times, I thought my struggle was over. Come to find out, it was just the beginning. I was diagnosed with edema, lymphedema, and pachyderma. About once....

I was about 32 when I went to the hospital for high fever and red skin. The doctors weren't even sure what it was. I was told after awhile it was cellulitis. Later I was told I had lymphedema. There was nothing to be done about it. Only a few even knew what it was. I was in and out....

First of all I am Kenyan, living and working in Dubai. I saw Kathy Bates on The Doctors show and tried to understand what she's talking about and thats when I realised I have lymphedema of which I have never been diagnosed despite visits at the hospitals in Kenya as well as Dubai. Simply because they didn't know....

My story goes like this. I'm a 36-year-old man living with lymphedema. For the past 19 years, I have never received any help or physical therapy. I have lost a marriage, relationships, and even a job. It took for me to get terminated from that job to get help from a good doctor. He took one look at my leg....

For several years now, my neighbor Jane has been dealing with the crippling effects of lymphedema, which doctors had thought earlier was cellulitis, and/or a few other various possible conditions. The pain she deals with is ongoing, excruciating at times and debilitating - making it very hard for her to deal with everyday tasks and life supporting expectations, combined....

When I was 27 I was diagnosed with cervical cancer and had to have lymph nodes removed and receive radiation because the cancer was in my lymph nodes. Five years later I developed lymphedema in both my legs and have suffered with it for 16 years. I frequently get cellulitis which is very painful but antibiotics usually clears it up. The simple....

My story begins at age 15. My legs were constantly swollen. After numerous trips to doctors, including a venogram, a kidney biopsy, being on water pills for years, no one had a diagnosis. I moved from PA to CT. I finally went to a doctor in Hartford who specializes in problems with the legs. He diagnosed me with primary lymphedema (born....

My son was born with lymphedema in the upper part of the foot. We were guided by different doctors and, after ten months, established diagnosis. Now we started with a lymphatic drainage massage; elastic stockings still have not been found . In our country it is difficult to find stockings for lymphedema and doctors who take measurement for socks in small....

My story begins when I was 26 years old. I was a young, healthy, and very social man. Then, I started feeling discomfort in my left leg. I didn't think anything of it. On Thanksgiving of 2006 I got very sick. I started getting cellulitis a lot, then blood infections, then hundreds of visits to hospitals. Countless doctors and no one....