Submitted by Kimber, August 2012.

I’m 24 years old and have had primary lymphedema in my lower left leg since I was about 10 years old. I wear compression stockings, use a pump and have tried wrapping and massage techniques in the past — but the swelling never budges (except by getting gradually worse over time). I also now experience a “pitting” swelling in my right ankle (which prompted me to start wearing compression garments on both legs) and occasional pain and swelling in my fingers.

For the first few years after I was diagnosed (only after my mom did tons of research), I wore my compression stocking daily but did not let my lymphedema slow me down. I went to the swimming pool with my friends, wore shorts to school and didn’t give my leg much thought. I’m not sure when it happened, but my outlook eventually shifted. By the end of high school, my leg never saw the light of day (except in front of family and a few close friends), and this continued through college. As it turns out, hiding my leg did much more damage than good, and my lymphedema became a huge source of anxiety for me. With my husband’s support, I bought a pair of shorts a couple of months ago and worked up the courage to wear them to an exercise class I regularly attend. I knew it was stupid to be so self-conscious, but I felt like I couldn’t control it. The first time I told some new friends about my lymphedema, I could see my kneecaps shaking! Since I stopped trying to hide my disorder, life has gotten infinitely easier; I feel more like my 10-year-old self.

As many of you know, the most frustrating aspect of having lymphedema is the lack of awareness. I live in a small, rural area, and most doctors I see don’t have a clue about what primary lymphedema is or how it affects the people who suffer from it. My best friend is in medical school and said she has learned very little about the lymphatic system. I periodically visit new doctors to see if I can garner any new information, but in the past 10 years, I haven’t found a doctor who knows more about this disease than I do.

I plan to make a trip to see a lymphedema specialist soon, and I’d like to try wrapping and massage again. Until then, I’ll do my best to treat my leg on my own — and feel lucky to be as healthy as I am.

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