Posted by Martha Adams on February 19, 2002 at 18:47:11:
In Reply to: Re: Lymphadema posted by sharon on December 09, 2000 at 00:37:27:
: : Has anyone heard of lymphadema? A friend of mine has this and is having trouble finding treatment because it's so rare. Any suggestions??
: I have had lyphadema for 32 years. If theres any one that wants to talk. Please contact me. I know quite a bit.
I have had lymphadema for over 20 years but it was just diagnosed 2 years ago. Very few doctors know about this condition, they all attribute it to being to heavy. Medical doctors in this country are not required to study the lymph system however German doctors have been studying it for over 40 years. My legs have become progressive worse, now my lower legs are as big around as some peoples waists, it also affects the way you walk and especially your ankles and heels. I went to a rehab center last year and had lymphatic massage for 5 weeks. I also use pressed cotton to wrap my legs and feet and then use special compression bandages over the pressed cotton. My legs go down quite a bit as long as I wear the bandages, but swell back up again in a day if they are left off. I now have compression knee high stockings that I hope to get into before long but you can't sleep in them. I miss being able to have free range of movement. One of the most dangerous conditions of this curse is the chance of blood clots forming in the main arteries in the legs. It is depressing to know that I will never be any better and I have to have someone wrap my legs, however, I am trying to lose enough weight that I can do it myself. I do believe that it runs in the females in my family because past generations have had big legs and very thick ankles. I received treatment at Health South Rehab in Vero Beach, Fl. and you may be able to get information and order forms for supplies from them. 561-562-5888, the german therapist, Giesela, knows everything. The condition can be caused by having lymph glands removed or by being born with too few. Hope this helps.