b'I believe a cure could be found if only this condition were properly addressed. It would mean a release from hell for all of us.Melanie Spear, New York, NYconcerned when the swelling in my lower leg appeared. I foundimportantly, compression has been proven to reduce the out about lymphedema by searching and reading about it on theprogression of this disease. Internet. When I asked my oncologist, he wanted to Wait and see. As the facilitator of a Lymphedema Support Group, my concern is I requested a referral to a lymphedema physical therapist whofor so many poor, sick, young and elderly lymphedema patients confirmed my condition, and I began wearing a compressionliving in pain. Their condition and lives deteriorate. They are stocking that day and learning the other daily care I would need tohospitalized again and again costing so much more. It doesnt have follow for the rest of my life. to be this way! LE&RN can improve our quality of life!Since my oncologist was an excellent and very caring doctor at a university medical center, I suspected that other cancer survivors were no more likely to hear about lymphedema from theirDEBORAH CROWhealthcare providers than I had been. I continue to feel stronglyOklahoma City, OKthat this situation needs to change. More research would help us understand the disease and bring more awareness of it. I was born with primary lymphedema in 1957. Physicians believed Lymphedema takes a physical and emotional toll. Much of this tollthat there was little to be done about the swelling in my lower could be avoided with the research and awareness to understand,limbs. Untreated, my ankles, feet, and toes became disfigured. treat, and prevent this disease. Concerned about stigmatization, I rarely disclosed and never fully exposed my lymphedema. I forfeited many opportunities because I chose to hide, and hiding came at significant cost to MARY C. ROSE-WALKER my social, psychological, and physical development. During my adult years, with better treatment available, I have managed to slow Logan, OH the progression of my disease. I was finally diagnosed in 2015, after dealing with the effects I recently earned a Ph.D. in Educational Psychology. I studiedof primary lymphedema for 30 years, since the C-section the experiences of young adults who grew up with primary of my second child. Aging made it worse and, finally unable tolymphedema during more contemporary times than I, amidst the walk, I sought treatment. Most of the OT and compressiondevelopment of the internet, and emergence of lymphedema as an garments are not covered by my insurance. Luckily, my important medical agenda. Their voices amend those of many lay pumps were covered. I have had to limit my work time and professional champions who recognize that lymphedemadue to lymphedema. This disease requires 23 hours a is an under-researched, under-recognized, under-insured, and day to maintain the strength to function as a normal life. under treated disease. Unfortunately, their voices also indicate that in 2020, young people living with the disease still experience egregiously delayed medical diagnosis and inadequate treat- FRANCI SCHWAB ment, even altering the trajectories of their lives. Funding New Carlisle, OH research about the lymphatic system and lymphedema will have an impact upon the social, psychological, and physical aspectsI developed lymphedema after having breast cancer treatment,of peoples lives.which included bilateral mastectomy with lymph node dissection, radiation, and chemotherapy. I developed massive swelling and unbearable pain in my arm, hand, and chest. I wear compressionELIZABETH BAKERgarments all day and another compression garment all night. My daily regimen includes an hour of therapeutic exercise. I use aLake Oswego, ORpneumatic lymph pump for an additional hour each evening.Im not sure how I got lymphedema. It started at 13. Before that, I Manual lymph drainage done by my lymphedema therapist reduceshad healthy feet and legs that allowed me to start on the varsity swelling and helps relieve pain, but visits are restricted by mytennis team early. But once my legs and feet began to swell and insurance. Medicare covers both lymphatic pumps and manualhurt, my athletics came to a grinding halt. It wasnt until I was 25 lymph drainage done by certified therapists.that I got an actual diagnoses and some treatment ideas, such as Compression is the missing critical component that is notcompression socks. Before that, I suffered for more than a decade covered. Without it, the fluid re-accumulates quickly, undoingwith pain and debilitating swelling.any progress made by the therapist and pump. Compression Even now, at 44, I still have all the same problems and very few has been proven to reduce complications, co-morbidities,helpful treatment options. And as I get older, it gets worse.hospitalizations and overall medical costs for us. MoreIts impacted my quality of life in every way, from feeling AN AMERICAN TRAGEDY 32'