Dear Dr. Madara,
Every day I study my left arm and breast in the mirror, checking for redness, splotches, or swelling. I stretch, do deep breathing, perform 30 minutes of manual lymph drainage, and put on custom compression garments which I wear on my arm and breast 24 hours a day, 7 days a week. When I feel the slightest pain in either of those body parts, I say a quick prayer and look for signs of increased swelling or (heaven forbid) infection. Six years after concluding breast cancer treatment which included a lumpectomy and removal of 21 lymph nodes, consistent vigilant oversight of my lymphedema (LE) has become a way of life and is my key to ongoing, proactive management of this disease.
I am one of the lucky ones. I was diagnosed at age 52 with secondary LE while undergoing breast cancer treatment at a renowned cancer center and LEA&N Center of Excellence. I started intensive treatment immediately with an experienced lymphedema therapist who educated me in the arduous steps required to manage this chronic, cruel, and sometimes life-threatening disease with a hard-to-pronounce name that, as of today, has no cure. I am privileged to have access to health insurance and excellent quality medical care. I also recognize this is not the case for many in the LE community who struggle to find qualified doctors and to afford essential compression garments and bandages. Because of the chronic debilitating toll that LE can have on the body and mind, it is imperative that fundamental LE therapy, garments, and devices become fully covered by insurance and Medicare.
I have experienced firsthand the need for increased public awareness, expanded research, additional funding, and substantive change to the curriculum of medical professionals. I often find myself explaining my LE not just to family, friends, and strangers but also to physicians, physicians’ assistants, nurses, and medical technicians. More than one doctor has had to Google “LE” while examining me and I have had LE-related cellulitis misdiagnosed by emergency room physicians. I cringe when medical professionals minimize my disease by telling me to be happy that I am alive; subsequently, I have become an even more determined advocate for myself and the millions who have been stricken with this profoundly life-altering disease.
The journey to end LE is not a straight line – I implore you to support the mission of LEA&N and the LE community: to raise awareness, educate the medical community, improve care and advance research towards a cure.
Jane M. Petty