I developed lymphedema early in my life and without any identified cause. One day in December 1978, when I was a healthy and active 20 year old, I woke up to find my right leg about twice the size of my left. I assumed it was a temporary condition caused by a long run I took the day before or from dancing with a dance team at school. When I visited the school athletic trainer, however, he told me that it appeared to be more serious and he sent me to the emergency room at the local hospital.
The doctors at the hospital had no idea what was causing the swelling in my leg. I spent the next three months going from doctor to doctor and hospital to hospital, looking for a diagnosis, while the swelling got worse every day. Finally, I finally found a doctor in New York City who knew what I had. He said I had a lymphedema, a chronic, progressive disease with no cure. He did not know why I gotten the condition. He guessed that I was born with insufficient lymph
glands. He told me that, while there was no cure, I could and needed to treat the symptoms. He said that I should always wear surgical support stockings, elevate my leg whenever possible, and be extremely careful when doing any activity that might damage my already compromised lymphatic system. I was shocked that there were cures for all kinds of diseases, but not for this one.
That was 38 years ago, and amazingly little has changed in the treatment of the disease. There still is no cure for lymphedema. In fact I have met many doctors who know less than I do about the proper treatment of the condition. The reason I am able to work, exercise and do most of the activities that I love to do is because I follow a meticulous and tedious maintenance regimen every day. This includes daily bandaging with extremely high compression stockings 24-7, elevating my leg, swimming, and frequent massage. Many daily activities that most people take for granted like standing in line or sitting at a movie are painful for me. Still, I consider myself so lucky. I have access to treatments and doctors and I have the
opportunity do these daily treatments. Not every other lymphedema sufferer has this help. Thankfully our private insurance company does cover 2 support stockings per year. However I need to supplement this as my condition requires very heavy compression. I go through many more pairs in a year. I have to cover the cost of bandaging myself.
We would be so grateful to have help on the federal level in support of a bill that aims to improve insurance coverage for the doctor-prescribed compression supplies that are the cornerstone of lymphedema treatment. The stress that this disease puts on sufferers is great and it would alleviate some of this stress for many if insurance coverage was provided.
