I am a 31-year-old single mother of a 6-year-old girl. I have Primary Congenital Lymphedema or Milroy’s Disease. My lymphedema was noticed at birth. My lymphedema not only affects my lower left leg, but also my entire left side and parts of my right. Being that my father was in the military and awareness of lymphedema was minimal at the time, I was misdiagnosed for years.
During my preteen and teenage years, my lymphedema started to get more noticeable. In July1998, in an attempt to treat the excessive swelling, they performed liposuction twice in two weeks on my left leg, which caused further damage to the leg. After that I was diagnosed with lymphedema in 2000. The insurance company only allowed a certain number of visits, which were not enough to treat the severity of my condition. In January 2005, I was put on bed rest for two weeks due to infection and was unable to walk. I was at the hospital every week getting treated for infections and eventually had to stop working. In November 2006, had a debulking with Charles Procedure performed. That was a 12-hour procedure, and I was released 12 days later. It was not the best decision, but I felt that was my only hope, seeing that I was denied further treatments. Even after the debulking, I have had trouble with swelling in my foot and thigh. I had to quit working and eventually became disabled.
In November 2007, I traveled to Norton Clinic and they recommended a six-week treatment for me consisting of 1.5-hour MLD sessions each day, costing $300 each, totaling $6,000 to $9,000, not including treatment garments—none of which insurance covers. At the time, Medicare only allowed me 18 therapy visits in one year, so additional out-of-pocket expenses had to be made to get the full treatment recommended for the severity of my lymphedema. Medicare does not cover bandages or compression garments because they consider them “disposable” products. Being on Social Security limits my ability to meet these out-of-pocket expenses, which in turn limits my ability to treat and maintain my lymphedema at a functional level. If Medicare was to cover garments and bandages and allow the amount of time needed for MLD, I would be able to maintain and better control my lymphedema and limit infections.
