b'deformed, to having limited mobility and pain. Id love forSARAH McCOLLUMtreatment options to advance and be covered by insurance!Its a real disease, and yet so few understand it, including thePortland, ORmedical community! I was 25 when my left leg lymphedema presented itself and changed my life forever. I had just moved to NYC by myself to pursue a career in the fashion industry. It took me years to find doctors who ELIZABETH BASACA could explain lymphedema to me, and years more before I could Portland, OR fully understand, accept, and confront this challenging condition. Our 9 year old daughter Naomi has lymphatic malformations onSince then, I have had three surgeries and one major cellulitis her left arm and hand. She had sclerotherapy when she was sixinfection, and have felt the toll of my left leg lymphedema both months old and her condition was manageable for years, despitephysically and mentally every day. Ive had to fight for my rights continued growth of her malformations.against insurance companies and medical facilities that dont understand what lymphedema is or how to treat itUnfortunately, when she was seven she started to suffer from dailyIt is simply not right that lymphedema is so under-recognizedpain due to the malformations impeding on her radial nerve. by the medical community and that treatments and support are She had debulking surgery at OHSU at age eight, which finallynot covered by insurance companies. Ill never give up and will relieved her pain and physical therapy helped her regain use of thecontinue to fight for us to get the recognition and treatment we affected wrist. Wearing a custom made compression garment anddeserve. Lymphies unite!lymph drainage massage (supported by a Certified Lymphedema Therapist) have also continued to help her but the reality is this condition has no cure. She still has new growths and regularKATHY MOREFIELDchildhood illnesses cause flare ups.Bend, ORHow her condition will develop over the years is unknownand her medical needs are multifaceted. Without good healthI was diagnosed with secondary lymphedema while undergoing insurance, her medical expenses could easily drown our familychemo following breast cancer surgery. I was lucky to be in a in debt. Lymphatic diseases have a huge impact on so many lives,medical group that had a young LE physical therapist who had old and young, and our elected officials need to take action togone to surgeons requesting they send their breast cancerimprove our healthcare system to include better support forpatients to her post-surgery. Before any symptoms occurred.people like our dear Naomi. I got an early diagnosis and started treatment immediately.At age 6, I was diagnosed with KLA. I really hope that the experts will work together, get lots of funding and research dollars to help kidsjust like me.MICHAEL PROKOPOWICZBaltimore, MDAN AMERICAN TRAGEDY 33'