b'LISA VENUTO DANIELLE BELLCoatesville, PA Clinton, SCI am 54 years old and have Stage 3 Lipedema with secondary18 years ago I had my first child. I spent the next ten years fighting lymphedema. I was just diagnosed a few years ago. I grew up all myswelling in my feet, ankles, and calves. I had leg infection after leg life struggling with weight. I was always told that I ate too much andinfection. It took a dual leg infection from toes to above my knees needed to exercise more. That was not true. I was always active andbefore I was referred to a vascular doctor who diagnosed me with have been on a diet since the age of 12. If I had a diagnosis earlierbilateral lower leg lymphedema. I now wear compression stockings on, I could have used wraps, leg pumps, dry brushing, MLD, etc., todaily, but cannot afford a pump. Help is needed to find a cure for help slow down the progression of my disease. I have just had boththis debilitating disease. My leg tissues are starting to harden andhips replaced (five years apart), and I believe this was due to carryingI have to wear special thick garments over night to help break up extra weight on my lower half.the fibrosis. I urge you to please help us get proper diagnosis, and help us toA cure in my time would allow me the freedom to enjoy more have access to qualified health providers. We also need to haveactivities with my kids and future grandkids. I live in constant insurance coverage of supplies. I spend $300$400 every time fear of a leg infection. Despite precautions, my last leg infection I purchase my wraps. They are supposed to be replaced every sixwas in 2019, and I spent 21 days on antibiotics to clear it up.months. I stretch the time out to 810 months. Because of my condition, I no longer work, so it is a hardship for me to pay for them.LASHONN EDMUNDSPlease help us to get this disease recognized and help us get proper treatment and supplies. Thank you Greenville, SCI developed lymphedema 21 years ago after my third caesarean. ERICA ZERVANOS The lymphatic disease caused my feet to swell so badly thatI was unable to wear appropriate shoes in a corporate environment, Philadelphia, PA which drastically changed my quality of life. I urge Congress to help I was diagnosed with lymphedema when I was fourteen yearsour efforts in moving the lymphedema agenda to the forefront so old. I came home from school one day, and my right thigh wasthat we can find a cure. No one should have to live like this and not significantly more swollen than my left thigh. I was an angrybe able to feel confident about themselves due to a disease. I know teenager who didnt want to believe I had injured lymphatics, there is a cure out there, and with the support of Congress I feel so I refused to wear compression. All through my teenage years noconfident that we can find that cure soon.one was able to tell me whether or not I had primary or secondary lymphedema. I always thought I had secondary because I was bornWILL MILESwith normal legs. Its been a never-ending journey trying to find answers. It wasnt until my twenties that I decided to just give up onCAYCE, SCtrying to figure out why I have this but, rather, take care of it. I haveI am 23 years old and I was born with lymphedema. We traveled had two liver transplants, and I struggle with chronic infection.around to many different doctors looking for a diagnosis of why my Needless to say, my lymphatics have taken the front seat in regardsankle was swollen and never got one. While visiting my Grandma, to my chronic illness. I have carried around so much shame for tenher neighbor, a nurse, told us it looked like bilateral lymphedema. years of my life because I felt like I was deformed. As soon as I wasWe finally had a name to call it. We soon began traveling again to diagnosed, I threw out dresses and shorts. Its a burden that I carryfind doctors and therapists who could give us information to help every day. I wear compression stockings every day now, and I haveus understand my new diagnosis. The only one we could find that a lymphatic pump, yet its still not enough. I walk around with knew about lymphedema was a therapist an hour from my home. the reality that there are no clear answers as to why I have this,He gave us ways to help manage my lymphedema with compression and that there is no cure. It affects the way I feel everyday. garments and different machines. It affects my mind and my overall quality of life. Please help people like me. I love sports and played collegiate golf at the University ofSouth Carolina. With my active lifestyle and constant traveling, it became harder to manage my lymphedema and keep a good It is simply not right that lymphedema is so under-recognizedby the medical community, and that treatments and supportare not covered by insurance companies.Sarah McCollum, Portland, ORAN AMERICAN TRAGEDY 36'