My friends and family know me to be a happy, outgoing, giving lady. I love helping others in need and supporting reputable causes. I unfortunately suffer with Lymphedema. It can be painful and debilitating most of the time. In the year of 1994, I became gravely ill. I was in my Junior year of college. Initially, doctors did not know what I was sick with. I was always chronically fatigued and had minimal ankle swelling.
I was nauseous and sick often, however no one was certain what exactly was causing my symptoms. Eventually, my Doctor had a specialist fly into the city where I lived at the time to assist in correctly diagnosing me. It took a little more than 6 months, after a series of testing, assessments etc. before I was diagnosed with Auto Immune Hepatitis and Cirrhosis of the Liver. I was shocked beyond belief.
I wondered how and why! I declared that the doctors were wrong, but they were indeed correct. I was not a drinker, nor was I “sloppy” with my health and eating habits. I was still in school and loving life. This news was a nightmare! I was put on a medication regimen but it didn’t stop the cirrhosis from hardening my Liver.
Fast forward 5 years after diagnosis, I was placed on the Liver Transplant waiting list. I was successfully transplanted in 2001. By this time I was swelling more in both my legs and ankles. It was not a concern to anyone at the time because they
didn’t know how to treat it and the focus was my transplant.
Nonetheless, I suffer severely with Lymphedema. It is very expensive to get the proper treatment. Most hospitals, doctors and others in the medical community have no idea what Lymphedema is. This is unfortunate and it is my hope that Lymphedema is is treated as any other medical condition. It is also my hope that Lymphedema treatment and treatment garments will be covered by Medicare and other insurance carriers. I am an advocate for all those who along with myself suffer with Lymphedema.
I have had numerous infections and hospitalizations due to swelling and the infections. There are many days when I cannot put on shoes or walk. My family has to help me get around often. I cannot afford the compression garments. I often times wear garments that are torn which are ineffective. I have had to give up wearing skirts, dresses and heels. I am only 43, and would love to wear a dress. However I would love it even more if the Lymphedema Treatment Act is taken seriously and passed! I would be the happiest girl in the world!
