b'KRISTIN HILLENBRAND NATALIE MICELIAlpine, CA Palo Alto, CAHi, my name is Kristin! When I was 24 years old I was diagnosedAfter getting pushed around for years, six months ago I finally got with stage 3 melanoma. I underwent two major surgeries to diagnosed with primary lymphedema. Its an extremely limiting remove all cancerous lymph nodes, as well as a year of bio-therapydisease and the available therapy options are time consuming and treatment. This left me with Stage 2 Lymphedema. Funding for limited. Being a person under 30, development in this area would this lifelong disease would greatly help my family in treating andbe life changing.maintaining my lymphedema! Between my lymphedema therapist, my lymphedema machine,SYLVIA MONTEROmy compression garments, and all of the other expenses that goes with this awful disease, it gets so expensive for my familyTorrance, CAand we struggle with the financial burden! We have paidIt all started when I was entering puberty. I noticed that myeverything out of pocket and it has cost our family well overlegs were developing a lot of what I thought was cellulite. As the $25,000. Please make this right so that insurance covers what weyears went by my upper body always seemed normal size but my need for this lifelong disease! Thank you! hips and legs were widening and becoming heavy. I was very active and didnt understand why I was fat. When I became a mother it KELLIE HOWARD 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 Clayton, CA fat disease. All those years of crying and not understanding why my One of the greatest and scariest days of our lives was August 16, 2016.legs were so big and painful all made sense. I want insurance The day my grandson Grayson was born. You see, he is our first (andcompanies to understand that we need help and that surgeries only) grandchild and we were ecstatic on the day he was arriving! and garments are a necessity for a better life to treat this debilitating disease. My mother has this condition as well andHis birth was a bit difficult for his mom so it turned out that heshe has lost a lot of her mobility at the young age of 53. So please, would come via C-section as he was presumed to be a VERY BIGCongress, help us! Thank you.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 willTERRY MOOREaffect him the rest of his life and as of now there are no cures,Sylmar, CAno treatments and very little in the way of research being done. PLEASE, PLEASE help our adorable Grayson to have the best lifeI have had symptoms of lymphedema in both legs for overhe can by giving more funding to find a way to help him and so40 years, but was only just diagnosed in 2015. Lymphedema many others in this situation. 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 CHRISTINE LIEBER it eases on its own. I have learned that a delay in diagnosis happens San Diego, CA to a lot of patients because of the lack of proper education of this condition by medical students and physicians and this was true in Facing life and death Uterine Cancer was rough! But having to my case. Once I was diagnosed I found it extremely difficult to get live with debilitating lymphedema for the rest of my life isthe proper medical compression supplies that were needed to treat unthinkable! Its like playing a chess game, where whatever moveand manage my lymphedema.you make throughout the day, you are constantly thinking howMy Medicare insurance has not paid for any of my compression does it affect the limbs?Continuously fighting with insurancesupplies, so I have to pay out of pocket, which is a large expense companies, going to MLD appointments, using pumps, garments,for most people, but even more so for individuals like myself night garments, bandaging, infections, cellulitis. Emotionally andwho are living on social security disability (due to my condition). physically its an exhausting existence! Yes, I am alive! But where isIn order to reduce or prolong the chances of the swelling in mythe quality? So I ask you CongressHELP! legs getting worse, I must wear compression garments every day. Finding a cure for lymphedema would make it possible for meKATHLEEN LISSON and all others with lymphedema to be able to live without theSan Diego, CA pain and full-time daily care involved with managing this disease.It would also relieve us from the high cost that puts many of us in It is frustrating to me as a lymphedema therapist that this financial hardships.clinically curable disease is so undertreated. We need more insurance coverage for garments and ICG imaging andlymphatic microsurgery and super microsurgery.AN AMERICAN TRAGEDY 9'