b'beneficial in fighting this chronic illness can be detrimental. Beinglittle but we need a cure! We need education so that more able to access proper medical care and garments would reduce sodoctors dont just say, Youre fat, lose weight. Please help us!!!many unnecessary infections and illness. Please help me in the I wake at night with pain, have arthritis in both knees, and fight against lymphedema. because I will not heal because of lymphedema, I cannot have knee replacement. The pain is unbearable most days. I beg of RENEE PLEMMONS you to educate and do more research to find a cure!!!Appleton, MN JACKIE BARNETTMy story with LE started years ago when my legs started swellingColumbia, MOfor no reason. My doctor thought it was from my fibromyalgia and said, I believe you have edema. But he wasnt sure which kind. SoIm 49-year-old breast cancer survivor and I have lymphedema after years and years of living with my legs feeling so heavyandin my arm, hand, and breast due to cancer treatments that saved feeling the retention of water building up in my legs and then mymy life. Im grateful to be here, but my new normal now involves armsI finally needed to see a specialist. Now I am receiving exhausting daily care (manual lymph drainage and using a pump LE therapy and I have this amazing machine to help as well.one hour every day) in the hopes of stopping this regressive Problem is, it all costs so much and my insurance only coversdisease and avoiding cellulitis and sepsis. I have annual expenses part of it. I used to be able to walk for miles and now I get tinglingfor arm sleeves, gauntlets, and bras. None of these costs are covered pain in my legs and swelling after a block or so. Standing more thanby insurance and requires nightly washing and care. I have to be five minutes causes great pain. This has prevented me from doingcareful in the sun, cant exercise like I used to, and my daily care so much daily. Im uncertain if my LE was caused from all thetakes time away from my loved ones. My life has changed. But the accidents I was in as a child or from the four C-sections. But I amscariest part is that doctors barely understand this disease and hoping that my story helps others to understand the pain so manyits impact. There needs to be funding for those of us who deal of us have to deal with. with this daily, funding for research and an increased emphasis on this disease and the lymphatic system for medical students and nurses. I am blessed to be in early stages, for now, and fully ELIZABETH SIMMER employed, for now, but my future scares me with this disease. Saint Paul, MN Please, please, please pass this bill to improve care and resourcesfor a disease that affects millions of people.At age 36 (20 years ago) I found a lump in my breast. It ended up being cancer. I underwent surgery (lumpectomy), radiation, and four years of Tamoxifen. Before surgery, I was told I might getCAROL FULLERsomething called lymphedema either from the surgery or duringManchester, MOradiation. I noticed swelling right away after the surgery in my right arm. I was a lucky one. My physician sent me to a physical therapistIn 2016 I was diagnosed with breast cancer. I had chemo, a double immediately and I was educated on what lymphedema was, how tomastectomy, surgery, and radiation. I lost most of my right side manually massage it, how to wrap my arm, and was sized foraxial lymph nodes and now I have lymphedema in both arms,garments In hindsight, the fact that my lymphedema wasand in my trunk. I need a minimum $210 worth of compression recognized immediately and taken seriously was amazing. This wasgarments every six months.20 years ago (2000). Ive continued to have physical therapy support during flare ups, education on keeping my arm healthy, and care and support from my physician. Im a lucky one. All peopleCINDY McDONALDdeserve this type of education and my insurance pays fully orColumbia, MO80% for my care and garments. This is how it should be for all people. I need my right arm and without all of the care, time,I thought lymphedema was a disease for unfortunate Africans and attention I give it, I would be unable to use it. bitten by mosquitoes, until I developed it in both legs after pelvic lymph nodes were removed due to uterine cancer. I thought celiac was a disease that only affected sickly starving children, until IEMILY GOFF was diagnosed with it at age 53. I thought I was fat and lazy, even Oakland, MS though I was continually dieting and exercising, until I discoveredI had Lipedema and Hashimotos Disease. All of these diagnoses I have struggled with leg pain since I was a little girl. After cryinghappened to me within a few months in 2014, and suddenly my night after night, my parents took me to doctors. They were told itworld was completely affectedfrom the food I ate, to the clothes was growing pains and I would outgrow it. I didnt. I wasntand shoes I wore (which now included the awful, ugly, thick black diagnosed with lymphedema until after age 55. So little is knowncompression hose from waist down to my toes), and even to the about my disease that even doctors had no idea! I finally waschairs in which I sat. All were changed as a consequence of my fortunate enough to find a primary physicians whos wife alsobody turning against itself with these incurable progressive struggled with lymphedema. He sent me to his hospital forautoimmune disorders. I could not be more shocked at the treatment. I live in a rural area and traveled nearly two hours eachreprehensible lack of knowledge of my oncologist and family way, three times a week . Because insurance doesnt cover it, and Imedicine practitioner about the above-mentioned diseases and lost my job, I could no longer afford treatment. Treatment helps adisorders. I have had to educate myself completely, as well as advocate for any treatment. This needs to change! Find the cure!AN AMERICAN TRAGEDY 24'