Beth’s Story

My name is Beth and I have lymphedema in both legs, my left leg is definitely the worst of the two. At the onset of the swelling I didn’t have medical insurance so I was unable to pursue treatment. By the time I did have insurance and finally found a therapist, there wasn’t one in my town my leg was in really messy shape. It was weeping in several locations and trying to keep it clean and dry was a really difficult chore. I was able to have 10 session of manual lymph drainage and wrapping, having to pay the same co-pay as seeing my regular physician for every session. By the end of the 10 sessions my leg had responded well enough to get my compression garment…however I was unable to buy the custom made garment. I found some pre-made knee high compression hose on-line and they did help for a time but perhaps since the compression on the ill fitting hose wasn’t correct my leg is actually now larger than it was at the time I was able to go for treatment. I do try to wrap my leg from time to time but my compression bandages are getting a little old and loosing their compression strength, replacing them would cost over $250. My insurance, which is Medicare, will not pay very much on any lymphedema treatment so I try my best to make do with what I have. The worst thing about having lymphedema, aside from the pain it causes and the stares from people who have no idea of the ordeal of living with lymphedema, is that I can no longer drive, my left leg is too large and is in the way of my right working the pedals. So lymphedema has actually made me pretty much a prisoner in my own home. We need the lymphedema act, the sooner the better so that myself and everyone else dealing with any form of this disease can get the help they need and not be bankrupted. Thank you for listening.