Sarah’s Story

When I was 9 years old, I sprained my ankle and my Mom knew something else was wrong because my ankle and part of my calf was too swollen and there was no break. After that I went from doctor to doctor of all specialties for 9 months (missing school often) until we were finally given a diagnosis of Lymphedema Primary. Turns out I was born with not enough lymph nodes and the few I have were stunted in growth at the top of my right leg. Growing up I faced a lot of difficulties in not knowing what to do and how to properly take care of my leg. I once met another girl online who had LE, and while in college she constantly was contemplating suicide and had so many problems. It terrified me that that might become me one day. I could only try to keep hoping I wouldn’t be like her. Fast forward to almost 3 years ago: I began having a series of illnesses. Every 7-10 days for TWO YEARS, my body reacted with all the symptoms of appendicitis, except for the fact that through tests and surgeries we couldn’t find a single thing wrong with me. Insurance wouldn’t cover the tests and surgeries to diagnose my symptoms even though I was in extreme pain, and was losing weight from not being able to keep food down a few days a week. After I finally found a doctor who knew how to help me, she knew that all I needed was to get my leg under control and my current compression garments weren’t doing much help. The garments I had been buying for the previous decade were not covered by insurance and costed $800 each. Luckily my family worked really, really hard to save up for new stockings and I got my LE under at least enough control so that I haven’t had an episode since May 6, 2012. If insurance were to cover my garments or at least help, then I would never have had to wish I could cut off my leg, and even pray for it. Today I am healthy, but who knows if I’ll ever get to let my guard down?