b'I started experiencing swelling of my leg after inguinal hernia surgery. I was misdiagnosedand not properly educated on how serious or life-altering having lymphedema would be.KIMBERLY GLOVER Washington, DCDEE GRIDER In 1998 I had an emergency C-section to a preemie, and was introduced to treatment. After that, I had lymph node transfer Huntsville, AL surgery in 2014. I am religious about compression stockings. Seven years ago I developed lymphedema after a double mastectomy Eventually, I learned about online support groups. I learned thatand lymph node removal surgery. I am blessed to have a veryI was not alone. experienced therapist in Huntsville, Karin Hislop of TherapyOnce I broke free of my isolation, I found myself intensely Achievements. She helped me get my disease under controlmotivated to do something to make our lives better. This is when through manual decompression massage. But I needed more wemyself and two co-foundersstarted a shoe company to make help to be able to take charge of this incurable condition. shoes to accommodate edema. Because of this, I talk with lymphies I use custom compression garments and a pneumatic compressionevery day. There are so many others suffering because they dont pump. Fortunately, my insurance covers these items but nothave the right support or treatment. Good treatment is indeed the without a fight every time I replace my garments biannually. secret to health and happiness for everyone like me that has this Many of my friends are not so blessed and can not afford tochronic condition. purchase these items. Please make therapy, compression garments and devices covered by insurance and Medicare. These care items are necessary to control swelling and prevent serious infections.AMANDA HADAWAYLymphedema deserves more research and funding to help theSurprise, AZmillions of us who suffer with it.I was diagnosed with lipedema in May 2019. I also have lymphedema, so I actually have lipolymphedema. These diseases LAURA ODEN cause me daily pain and they have limited my mobility quite a bit over the last 10 years. Unfortunately there is not much knowledge, Anchorage, AK even among the medical community about lipedema. Its very hard I have struggled with lymphedema my whole adult life. Like to get diagnosed and to get the care you need. Our conditions arent many others, surgery stopped the cancer but also started a lifelongcovered by insurance. These are lifelong diseases that affect our struggle with chronic swelling in my right leg and foot. quality of life. We need education, awareness, understandingI lived my lymphedema life in isolation, unaware of the millions ofand insurance coverage. others who shared my struggle. My doctors had little or nothing to offer me. They became a repetitive chorus of I dont know what to tell you.AN AMERICAN TRAGEDY 4'