b'but yet most go undiagnosed, even 80 years after the first case wasTIFFANY DETLEFSENdiagnosed at the Mayo Clinic. Instead we are fat shamed, made to feel it is our lifestyle, and get told we need gastric bypass surgery.Berne, NYThe sad truth is that gastric bypass would only work on the regularLymphedema is the bane of my existence. In 2008, my daughter fat, but even it cannot improve the Lipedema tissue. was born seemingly healthy. We first noticed her swollen foot at We stay as active as possible, not in the hopes of losing weight, likeseven months old. She didnt get a proper diagnosis of primary someone without our condition would expect. But in the hopes welymphedema until she was 1 and 1/2 and by that time her can maintain our mobility. But it is a continual fight that laterlymphedema had progressed to both feet and both legs. The next stages are losing more and more. We need research, we needfew years would prove to be the most trying, traumatizing years treatments that work, not just self care treatments to manage theof my life. A lack of knowledgeable doctors, therapists, and symptoms, but real treatments to stop the progression, andinsurance companies along with the struggles to find proper hopefully one day find a cure. treatment topped with cellulitis infections and a very sick little We spread awareness as much as possible, so others can getgirl, actually led to a PTSD diagnosis for myself. The disease and diagnosed sooner and not share in the later stages of thislack of knowledge surrounding it was literally killing us both. debilitating condition. Thank you for listening and hopefullyWe decided to take charge instead of letting it win and joined forces helping with funding for much needed research. with LE&RN. The patients we have met along the way inspire us to fight harder everyday, but we cant do it alone. My daughter, Emma, and I raise funds for LE&RN every year, we lobby in NY and DC MARIANNE DeANGELO for proper insurance coverage and research funding every year. Emmas a youth ambassador and I chair the NY chapter, but really, Massapequa Park, NY Im just a mom trying to fix her little girl. Now, we need you. Its My daughter was diagnosed with lymphedema at the age of 28 andtime to research the lymphatic system and find cures. We are so sought treatment at a facility specializing in this disease. Theseclose to finding real answers which will not only cure lymphedema centers are few and far between. The facility has now closed (reasonsand lymphatic diseases but many other diseases as well. Please unknown) and we are looking for another physician specializing inkeep LE&RNs initiatives at the forefront of your agenda.this area. I am a registered nurse and very concerned about the lack of resources available. Thankfully my daughter, now age 40, is a responsible adult and does everything she was taught to keep it underBETH DORANcontrol. We do not know what the future holds. There are manyFort Ann, NYothers who have not had thebenefit of the education she received. Ive had lymphedema myself for the past five years after being I have seen first hand what lymphedema does from my daysdiagnosed. There is very minimal help or research beingworking in hospitals. It can be terrifying. We need funds fordone on this terrible disease! I have had cellulitis multiple times education, treatment and research. Insurance companies need toand my legs are difficult to heal. The doctors or wound care expand coverage for needed supplies. The money spent wouldspecialists dont know how to treat me. Most of the time its, Try probably offset money spent used to treat related psychologicalthis or try that. I have compression garments and pumps to help issues and, I suspect, lead to less unemployment benefits paid tome and will soon start therapy again. Please. Im begging for more people who are unable to work. research to be done to help all of us who suffer from this. Something has to be done!EMMA DETLEFSEN NICHOLAS HERENANDEZBerne, NYMy name is Emma. Im 11 and I was born with primaryRiverhead, NYlymphedema in my legs and feet. Im a youth ambassador forMy name is Nicholas. I am nine years and Ive had lymphedema all LE&RN because we need more knowledge and research about themy life. When I was a baby my mom and dad saw swelling in my lymphatic system and eventually we need a cure. Most of the time body and took me to the hospital. I was there for a week. My mom I can live a normal life except for having to wear compression allsays the doctors did so many tests and still didnt know whatthe time. But when I get sick with cellulitis, I miss out on life forwas wrong with me and I was super sick. It turned out I had weeks at a time. Ive had 13 cellulitis infections and Ive beenlymphangiectasia in my stomach and some issues with my hospitalized 9 times. Unless we can get the government to fundlymph system. (I know, is that even a word! I still dont understand more research to find a cure these numbers are only going to getwhat those words really mean.) My mom said it was so scary but bigger. I try not to let it get to me but it is actually a really sad thing.my doctor, Dr. W, was the best. He never gave up on me my mom said. Im doing my best to try to fix things for everyone who suffers. I tryUntil I was eight I had lymphedema in only my right leg. Last year to be the change. I have lobbied in NY and DC since I was sevenmy other leg really swelled up and it hurt so much. Now I have and attended over 50 congressional meetings so far. I fund raiselymphedema in both legs and the doctors dont really know why. for a cure with my own lemonade stand and try to help pass billsThats why I want doctors to do more research because there could like the LTA that would help people afford compression. Thats abe a potential to find a cure.big problem right now and an easy fix. But we need your help. We need a cure for lymphedema and all lymphatic diseases andIt would mean a lot to me if they found a cure. The socks thatwith your help we can all find a cure together. I wear on my legs all the time are very uncomfortable at times AN AMERICAN TRAGEDY 28'