Kathy’s Story

I have Lymphedema secondary to Lipedema which is a chronic hereditary disorder of the adipose tissue generally affecting the legs, which causes the legs, and sometimes the arms, but not the feet, to accumulate fatty tissue. An overconservative estimate of 17 million women in the US, and 370 million women worldwide are affected like me. I have had this condition for years. I always considered it my mother’s legs that I inherited. My doctors didn’t know anything about it and because of that early treatment was not really an option for me. MLD a common treatment and compression stockings a staple of treatment for my condition has gotten harder because compression stockings are no longer covered by most insurance. It’s not right on so many levels. Lipedema disfigures and is very painful to the legs and if left untreated they continue to swell and the pain increases even more. The legs become so engorged that it also becomes very difficult to walk on them and the swelling crushes the lymphatic system which causes even more swelling and even more immobility. This happened to me. Walking upstairs and short walks have become a challenge for me. A simple mosquito bite caused a severe infection. As a former registered nurse I know I am responsible for my own health and since I have learned more about my disease I have been more proactive in my care. I have gone through much of my life savings to finally go regularly to have MLD drainage at a local hospital and paid out of pocket for compression stockings. It’s not an easy life and I am not complaining because I have met many more heroic people fighting their conditions with dignity and honor. I ask for the same opportunity. Covering the bandages and compression stockings allow people like me to remain more mobile and productive. As a mother and former nurse I plead that you make this so. Take them away and you put me and others like me at risk. It increases the cost of my care when the compression stockings are not available because of overburdening costs and hospitals that have run lymphedema clinics decide to stop helping us because they are not reinmbursed. This will effect all lymphedema patients including sometimes cancer patients who get it from treatment. Support the Lymphedema Act. Please.