b'ARNIKKA ROBINSON KARI FORMSMAUpper Marlboro, MD Jenison, MII have primary bilateral lower extremity lymphedema. AlthoughFinishing my surgery, radiation, and chemotherapy for uterine dealing with it for much of my life, I was officially diagnosed cancer, I thought the worst was over. I was wrong. Five months with it at the age of 22. I am now 40 years old. MLD therapy andlater, I looked down at my grossly swollen leg, beginning the compression garments allow me a quality of life, enable me to rearchallenge of my life coping with lymphedema. Management my children, and afford me the opportunity to work. Coverage involves 23 hours a day, robbing me of 100% of free time, of such medically necessary items makes sense on both aespecially when I struggled to remain employed. Leg heaviness humanitarian as well as fiscal level. makes it difficult to walk. The 23 hour-per-day need to wear compression (bandages or tight custom-made garments costing $5000+ per year) makes my joints stiff and painful. I know if I let THELOISE FERRELL up in this care, my future is a nursing home. Ashburnham, MA I have found zero physicians in Michigan treating this disease, I had breast cancer and a mastectomy when Iwas 33 years old.scant medical research, and inadequate funding. There is a Fifteen years later, I developed a swelling in the affected arm. desperate need to train more providers to treat lymphedema. My doctor had no idea what was causing this and thought Requiring insurance coverage of supplies/services is vital to avoid I had phlebitis. I developed cellulitis twice and had 30 days ofprogressive deterioration resulting in even more expense to the antibiotics both times while teaching full time and wearing aindividual, family and society, in addition to the waste in human heparin lock.potential. Most importantly, research is need to prevent and cure this common, chronic and neglected disease. I would love to return The swelling continued so my doctor sent me for an ultrasound.to being a highly productive person again, rather than spending so The technician who performed it said what I had was calledmuch of my life on coping with lymphedema.lymphedema and gave me a handout and the name of a physical therapist at Leahy Hospital, 45 miles away. I had just started a new job and my principal kindly arranged my classes so that I couldLARRY HEMBROFFtravel (75 miles in all) to the clinic for treatment and then to Jenison, MIwork. There were no local treatment centers. I currently wear compression garments and a heavier night garment to maintain myMy wife survived uterine cancer. After completing surgery, lymphedema. My arm is weak and I now have neuropathy andradiation, and chemotherapy, she developed lymphedema in her neuralgia in my left hand. I hope for more advanced research andleft leg and buttocks. Even with treatment, she is unable to remove better guidelines disseminated to doctors regarding treatment ofall the daily accumulating lymph. Her affected leg is roughlythis disease. 50% larger than her other, adding about 15 pounds to that one leglike walking around with two full gallon-jugs of milk strapped CATHERINE HOLLEY to your leg!To prevent worsening, she must continuously treat the leg with Quincy, MA compression bandages and garments. Daily she must unwind the 90 In 1988 I was a nurse in a large, Harvard-affiliated Boston hospital.feet of stiff bandages wrapped over foam she wore during the night, A physician said, Your right leg is swelling, I dont know why. Takeput on tighter but less bulky custom-made compression garments these water pills, it will help. It didnt. It was 20 years before I found(@ $1000) she wears during the daytime, take off the garment in a clinician trained in lymphedema therapy and treatment. Ive livedthe evening, roll up the bandages, put on the foam and wraps for with this disease in my leg for 32 years. THIRTY-TWO YEARS!the nighttime, launder the used garment, wraps, and foam for their With every decision or choice I make in life, the very first thing next use. Altogether, this takes 34 hours each day. Every day! I consider is the impact it would have on my leg. This is secondWhen home, visiting family, or traveling. For the rest of her life.nature to me now, like breathing. Many with lymphedema areThe lymphedema, wraps, and garments restrict her wardrobedisfigured/disabled and are unable to live a normal life. Socialand mobility, limiting what she can do with the time she has.distancing and isolation arent new for them, theyve lived with itShe survived cancer. Treatment side effects rob her of much offor years. Despite tremendous advances in many areas of medicine,the life she was spared.the fact remains that in 2020 the only thing I can do to move lymph fluid out of my leg is to literally wrap it daily with several layers of bandagesunbelievable. This is just my story. There are millionsMONICA HUBBERTof others. Lets find a cure together. Im happy to help. ImBrighton, MIcurrently working at Mass General Hospital, a battlefield for COVID-19, and so proud to be a nurse. Thank you. I have been an occupational therapist who has specialized the management of lymphedema since 2013. I have encountered many individuals who have been directly or indirectly impacted by lymphedema. Unfortunately, I continue to see the same issues because lymphedema is still treated like a sprained ankle versus a chronic disease. This is most evident when our third party payers AN AMERICAN TRAGEDY 22'