Hi Jake,
I came across your website through google. My name is Laura, I am 23 years old and have lived with primary lymphedema since the age of 13. The irony behind the situation is rich.
My parents are Puerto Rican and wanted to raise me in the United States under the umbrella of our Hispanic culture. This included a house rule of not being able to shave your legs until your fifteenth birthday, when you "became a woman". I spent the majority of my middle school years being ashamed of my legs and extremely conscious of the fact that I couldn't wear shorts. Gym class in hot weather is when I got the most looks, both with being shy in the locker room and being the only person wearing pants. I was at a constant battle with my parents about these cultural barriers that did not make any sense to me. It wasn't until a friend's birthday party that my mother came to me with a razor blade and said that my father and her decided that they were going to let me shave early. I had never been so elated in my entire life and ran to the bathroom where my older sister gave me my first lesson. I did not even own a pair of shorts at the time, so my mom had to cut a pair of my pants into shorts for me. Being aware of my hairy situation, all of my friends at the party were shocked to see my parents drop me off in shorts. I had a whole night filled with people telling me how wonderful my legs looked, it was a dream.
The party was a sleepover, so the next morning we all woke up and started wandering around the backyard barefoot. At one point we were standing in a spot where the ground was particularly soft and I remember digging my feet into it because it felt so good. Next thing I know someone screamed that we were standing in an ant pile and we all went running. As I was running I was kicking my legs up to try and swat the biting ants off of me, and felt a pop in my groin that temporarily hindered my running. We made in back to the house and were all laughing about how crazy that was as we compared our ant bites. I looked down and noticed that my right ankle had gotten really swollen. Panicked I called my mom immediately to pick me up. After a night of elevation and ice it still wouldn't go away...
That is when all of the crazy doctor visits and tests started with no results. I ended up diagnosing myself through internet research that was later confirmed by a doctor. I wear compression stockings everyday to alleviate discomfort, and my swelling is usually very minimal. Living with lymphedema is a mental game that you have to overcome. It has taken me a long time to relieve myself of unnecessary feelings of guilt and shame that come at such a vulnerable age.
If I am ever approached to do something, and my first reaction is not to do it (solely because of my lymphedema) then I always make myself do it. I refuse to let this condition be a hindering obstacle in my life. And due to this mentality I have won a pageant, been captain of my lacrosse team, gone on numerous beach and camping trips, and even walked across the stage at my college graduation in a DRESS!!!
I am very proud of myself, and refuse to let the daunting thoughts of others be the reason I hold myself back. It is completely out of the ordinary for me to share this with a complete stranger, but you seemed like you would be interested in my story. Thanks for taking up such a great cause!
Hello Jake:
I'm 36 years old and have had primary le in my legs since birth. Both feet were swollen when I was born and the left one immediately went down. The right remains swollen to this day, while the left leg has quite minor swelling. In my 20s, a series of tests were performed, which show absolutely NO malformation, blockages, or abnormalities of any kind in my lymphatic system. It remains a mystery to this day, and some feel I may have suffered minor trauma in utero.
In the past, I was prescribed pneumatic pumps, which have now been proven harmful. Now I have a flexitouch lymphedema system which mimics manual lymphatic drainage, and I wear a custom toe cap stocking and a thigh high stocking on my right leg each day. My leg is probably at its best right now...but I still hope to decrease the fibrosis/swelling in my ankle and foot with the help of laser therapy.
Few understand my condition, and it does sometimes keep me from wearing dresses or shorts. However, I am a very active individual, and I even taught deep water aerobics for ten years. I'm big on doing what I can and enjoying the life God has given me. I do wish lymphedema was better understood with better treatments available for all.
My new aspiration, after being newly married, is the hope of having a child. I wish you the best in your endeavor with the documentary. You are doing a whole lot of people a tremendous service by calling attention to treatment for this condition.
Warmly,
-- Suzie Burden