b'We had hoped the chemo was causing my LE and it would go awaylegs, and ankles that I cant explain. I have fought MRSA and almost when that ended, but then came radiation. Seven years later I stilllost my toe. A cure would set me free emotionally and have swelling in my right arm. I wear compression ALWAYS whichphysically!!! It would give me peace knowing my grandchildren keeps it manageable. I havent suffered any infections or any of thewould not have to live my life. A cure would mean hope, maybe horrible side effects I read about. not for me (Im 56) but for future generations. There are no I know my early diagnosis made all the difference. We need morewords to describe what a cure would mean. Just writing this I awareness, more research, more trained professionals and, abovefeel emotional.Just tears of joy. A deep gratitude in my heart. all, insurance coverage (including Medicare) for treatment! Freedom. Please Congress, help all of us who suffer!! Thank you!KATHRYN BURKE COLIN CONNOLLYAllentown, PA Pittsburgh, PAI am grateful beyond measure to be approaching five years past theLymphedema lurks in the shadows of well-known diseases but its end of my treatment for uterine cancer. Unfortunately, thateffect on everyday life is devastating, as I can personally attest to.treatment caused LE in my left leg. After considerable trial andIt requires an army of people to emerge from their own darkness to error, I came to manage my disease with regular exercise, carefuljoin together and raise a united thunderous voice of awareness and food choices, using a compression pump, and wearing a thigh-highrelentlessness. Congress, we need you to be the beacon of hope, to compression stocking. From the moment I awake and don thefacilitate and lead our army so that our children could have a stocking before leaving my bed and the reverse at bedtime, fighting chance. Weve been neglected by everyoneincluding the I constantly think about managing my activities and all of the abovemedical communityfor generations as our conditions and to prevent flare ups. Its a full-time job. No days off. Ever! So, ifsituations, physically and monetarily, worsen by the day. Pleasethere was a cure or treatment for LE, it would eliminate all thosehelp us, lead us, and help turn the tide for patients throughout the burdensome daily concerns. As well, Iwould regain confidence incountry. As someone who has had this disease for over 30 years my appearance and be significantly more active. and has seen many other patients suffer daily, I know that we need your leadership because we cant do it alone. Lets seize this But the most thrilling thing? I could once again sit. Yes, sit! opportunity and change the world for the better for millions of Like most people do, feet on the floor, or legs or ankles casuallyAmericans. Thank you!crossed. No need to elevate my left leg! I could sit comfortablyat my piano, my studio drafting table, in my friends homes, at the movies, concerts, restaurants, in the carall the places wePAULA KANCIANICtake sitting for granted. I sometimes dream about sitting like IPottstown, PAused to. A simple thing, until it isnt. Thank you for your time and attention. I am a 61 year old RN who underwent chemo, surgery, and radiation for breast cancer in 2016. That was traumatic, but developing lymphedema as a result of lymph node removal in DOROTHY BYERS 2018 has been more difficult since there is no cure. The effects Danville, PA 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.Im a human being that was born with primary lymphedemaIts exhausting emotionally and affects my self image. The garments second to Turners Syndrome. I have lived my life with all theare expensive, therapy with a lymphedema therapist requires acomplication of this swelling, seeping of lymph fluid out of both$50 copay each time, and they want to see me daily when I have a legs, and complications from having it in my bowels. When tryingflare up. I have a hard time physically tolerating the garments.to get some treatment, doctors state they dont know anything about this disease. Please help. AMBER KELLYRUTH ANN CLEVELAND Carlisle, PAWashington, PA My cousins son, Grayson, was born with lymphedema. He is one of the sweetest most playful children I know. Grayson has learned to I was born with lymphedema (Milroys Disease) in both legs move and operate like a fairly normal kid but knows that his whole and feet, as were my two grandchildren, ages four and five. life centers around his lymphedema. His diet, his activities, and his My right leg/foot is worse than my left. Lymphedema is horrible.growth. While this is not yet a burden he bears, it is certainly a Emotionally, for me every day it separates me from others. burden his parents bear in order to take care of him and provide I was made fun of as a child. Adults and children stare at me. him the best support they can. Continuing funding for research My personality has been shaped by this disease. I try and hide myallows this family to move forward with vital ways for Grayson legs and feet because they are unsightly. I wish I was stronger. I cantto grown and function in a world that does not easily cater toimagine NOT trying to hide who I am. Actually, someday in heavenhis needs. Funding for this is vital for so many families, notI wont hide. I will be free. just ours!Physically, I struggle with pain, swelling, and hardness in my feet, AN AMERICAN TRAGEDY 34'