b'EMILY DAVID occupational therapist who specialized in lymphedema.The treatment helped, but who knows how much better she could Colorado Springs, CO be if she received this help when she was younger? She worries I am a 40 year old female and have congenital lymphedema of about the future, how the disease will progress, the cost of the the left leg. After my birth, my parents were told I would likely compression stockings, pumps, and nighttime garments she uses, die or at least that I would never walk. I didnt die and I can walk,and if her son and future children will inherit the disease. A cure run, and jump. I have been seen by medical professionals from needs to be found.the Mayo Clinic and the University of Minnesota. After years of exploratory testing and surgeries, I was finally diagnosed mysenior year in high school. At that time, I underwent LymphaticNANCY ERRANTEMassage Therapy, which helped to control the swelling butBranford, CTunfortunately became cumbersome, time consuming, and did My daughter was diagnosed with primary lymphedema at age 11. not fit my teenage lifestyle. Her doctors said there was no treatment, and it might get worse. In the 22 years since, I have only managed my lymphedema She saw her doctor every year, but they did nothing to help her. At with compression garments. Even still, at the highest level of23 she became proactive to find an occupational therapist who compression, the garments do not adequately control the pain,specialized in lymphedema. The treatment helped, but if she had pressure, and swelling. been treated from the beginning her results would have been much The level of fear attached to a lymphedema diagnosis is alsobetter. Instead, she now has irreversible, Stage 2 lymphedema and prevalent in my mind. I am very careful with my leg to ensure has physical pain and discomfort. It was not easy as a teen to wear I am free of clots and cuts. To me a cure would mean freedomcompression socks.from swelling, pain and fear, a heightened level of confidenceHer lymphedema seems stable now, but she is only 32 years old.and self-esteem, and a reduction in other medical issues possiblyI worry about her health and mobility in the future, not to mention related to my lymphedema. the cost of compression garments, pumps, and night time garments that she needs to manage the swelling. A cure would give us hope for a healthy future and ease the anxiety of dealing and arguing ANGELA MARQUEZ with insurance companies. A cure would also decrease the worry Lone Tree, CO about the possibility of her passing this on to her children.I have secondary lymphedema in my legs due to cervical cancer treatment in 2007. I underwent a hysterectomy, chemotherapy,LEAH MORIARTYradiation, and had thirty-six lymph nodes removed.North Branford, CTMy lymphedema presented in March 2016, nine years later, with swelling in my left ankle. Within a week my entire leg was swollenI met my best friend when we were six years old. About five years and I could not fit in my shoes. After a series of emergency roomlater, she was diagnosed with Lymphedema and it was scary for me and doctor visits, I was diagnosed with lymphedema.as a kid to see my best friend go through that, knowing there was After my diagnosis, I immersed myself in research and realizedno treatment available for her. Despite being a healthy, active young attention needs to be brought to lymphedema and lymphaticperson who saw her primary care doctor each year, she didnt get diseases. I was shocked to learn that an estimated 10 millionthe treatment she needed until we were in our early twenties after Americans suffer from this disease and yet it is rarely known,she tirelessly researched and found an occupational therapist who discussed, or understoodeven in medical communities!specialized in Lymphedema. Now in our early thirties, she has Additionally, lymphedema affects a significant number of ourirreversible Stage 2 Lymphedema. I worry about her health and military veterans. You likely know someone either with or at risk ofmobility as we get older. I wish treatment had been made this disease. Not only is this disease painful and a financial burden,available for her when we were kids. We both had babies this year it also carries a heavy psychosocial impact due to disfigurementwhich has been such a blessing and so much fun for us. We have and ignorance. been best friends for 26 years and with a cure, I can rest assuredwe will live a long and fulfilling life together watching our kidsI vow to do everything to raise awareness, to be an advocate, grow up.to work towards fair treatment and a cure. A cure would mean freedom for me and all those who suffer from this debilitating disease. We ask that Congress prioritize funds for research ALBERTA RICHETELLEand education to help us find a cure and help us overcome New Britain, CTthis disease. When I was 10 years old I was stricken with polio, which paralyzed both my legs. I walked with long legs braces and crutches all ANNE CAROLLO through high school and college. When I enrolled in graduate Milford, CT school at the University of Illinois, I started to use a wheelchair because I had difficulty getting around the huge campus. I was very My niece was diagnosed with primary lymphedema at age 11. active, though, and competed in wheelchair sports on the national She didnt receive helpful medical care until she was in herand international level, winning several gold and silver medalstwenties and did her own research. She began seeing an AN AMERICAN TRAGEDY 13'