I have primary lymphedema in my left leg. The first time my leg swelled, I was 18 years old. My parents had taken me to Orlando for my college orientation at the University of Central Florida. After we checked into the hotel and got ready for bed, I noticed that my ankle and foot were abnormally swollen. The swelling did not go down.
For the next two months of my summer before moving to Orlando, I was poked, prodded, tested and sent to more doctors than I could count. My parents paid astronomical medical bills. Yet no one ever really pinpointed my condition until a year later.
When I finally began compression therapy, I was a very horrified 19 year old. I noticed results almost immediately and was very disciplined in the care of my leg. The bandages (up to six at a time) wrapped around my swollen leg were very hot in the Florida sun, yet I continued to do exactly as I was supposed to do. I completed my one-month treatment, which was designed to teach me how to take care of my leg, and I noticed incredible results. My parents were thrilled with the results, yet not so happy with the astronomical cost of treatment and bandages. My insurance only covered a marginal portion of the treatment and did not cover any of the bandages.
As one could imagine, I began to slack off on the care of my leg once I felt comfortable in things like shorts and dresses again. Slowly, my leg swelled to a bigger size than it was before, and I was unequipped to deal with it.
Now, in November 2010, I am 23 years old, married, a college graduate and living in Southern Mississippi. I had been without health care for a year due to financial reasons, and I just had my first leg-related doctor’s appointment yesterday since the onset of my new insurance. One can only imagine the condition of my leg right now. It is bigger than it has ever been, and it has started to affect all facets of my life.
My doctor yesterday seemed very misinformed about my condition and was happy to simply pass me off to the Cancer Institute in Gulfport, Mississippi. Because my lymphedema has no connections to any kind of cancer, as proven by multiple expensive tests, the thought of going to a Cancer Institute frightens me, yet I know that hopefully I can start to make some progress with my condition.
I know that I am lucky to not have cancer. I know that I am also lucky to be able to walk. God has blessed me with intelligence, a job, a wonderful husband and the ability to function relatively normally in every day life. However, I need people to understand a few things about my disease, my lymphedema. I need legislatures, congresspeople and anyone else who can do anything to help to understand that LYMPHEDEMA DOES NOT GO AWAY. THERE ARE NO SURGERIES THAT WILL “FIX” THE DISEASE.
I would like everyone who reads this to imagine themselves, or their wives or daughters, afflicted with a painful, swollen leg that will not go away. Imagine the effects upon one’s self esteem and the lingering physical damage of having a swollen leg. Now, think about how beneficial the Lymphedema Treatment Act would be. Any help is appreciated—more than you can imagine.
