Nicole’s Story

Lymphedema has always been a part of my life. My mother developed lymphedema in her early 20s. As a young child, I remember having to help my mother with daily activities such as bathing dressing and even house hold chores. At the age of 12 I myself developed lymphedema but was not diagnosed until the age of 18. When I turned 19 I no longer qualified for medical. I went 6 years without treatment because no one would treat me due to lack of insurance. Because of this I developed server blood clots and chronic wounds that led to 6 consecutive months in the hospital. A month at a rehabilitation center so I could learn to walk again and 7 months at a nursing facility to monitor server infections. This is the first time in two years that I have been home longer then five months at a time. Even though I am home, I am still receiving aggressive treatment. I go to a wound treatment center once a week to treat chronic wounds that I’ve had over a year. I also have a home nurse that comes out for treatment. I had to learn how to properly care for myself as well. while other people are out having fun and enjoying life, I am cleaning my wounds, elevating my feet and staying inside to prevent any further infections that could lead to an extended hospital visit. Lymphedema is not looked at a serious condition even though it is a very serious condition. It may not be as aggressive as cancer but it is just as important. Three times my mother was told I was not going to make it. Dealing with the daily challenges of lymphedema has been physically and mentally stressful for my whole family. The pain alone is enough to drive one mad. The lymphedema Treatment Act would be a huge help especially for people like me who can’t afford treatment and supplies needed to improve. Even now that I am disable my insurance only covers the basics which does not really treat the problem rather just keep everything under control. I dont wanted to live a limited life. Being denied insurance or treatment is denying my health, my rights to living the best that i can. I believe that if more people could hear my story in its fullness and knew the seriousness of lymphedema they would be more willing to help