Support & Communication for lymphedema sufferers

This should be a great place for us (lymphedema patients) to share our knowledge, experiences and provide support to each other.

It's so easy to feel alone when you have this condition. The majority of Drs are unaware of the condition and treatment options for it. Many dismiss it as "just swelling, learn to live with it". Most patients end up self diagnosing the condition through their own research. There is so little information on this disease. It is a lifelong battle with no cure. I really believe there is a need for a forum exclusive to this subject.

Personally, I have had primary lower extremity lymphedema for 6-1/2 years. My right foot/leg swelled up overnight in May of 1998 and nothing would reduce the swelling. It just grew and grew for no apparent reason. No injury. Nothing. For 3 years I saw several Drs (MDs, DOs, DPMs) and had tests performed from x-rays to vascular dopplers, no diagnosis was made. In 2000, grasping at straws I sought help from an Accupuncturist and Chinese herbal medicine Dr who finally diagnosed it as lymphedema but eventually said he couldn't help me. Nothing was working to reduce my swollen right leg (from knee to toes).

In 2003 I stumbled onto the Northwest Lymphedema Center in Tukwila, WA. I just saw a poster with the name. I contacted them and they explained the condition and gave me referrals to a Dr and a Physical Therapist in my area that had knowledge of lymphedema. In October of 2003 I began treatment which includes self manual lymphatic drainage (MLD) massage instruction, a period of multi layered compression wrapping and eventually custom compression garments which must be worn daily. The affected limb has reduced in size but is still larger than the left (which is now also affected). The MLD must be performed daily in order to move the lymph fluid through the system as the lymphatic system in lymphedema patients does not function normally. The compression garments worn daily and compression wrapping nightly. For life. There is no cure for lymphedema. We just try and manage it the best we can daily. We are at high risk for developing infections and bouts of cellulitis are not uncommon for us.

Well, I don't want to make this too long and there are websites that do a much better job of explaining this than I could ever hope to so I'll just post a couple of links to start out with.

I am very interested in talking with others that have this condition. I'm looking forward to meeting you! =)

Hoping this forum will be a productive meeting/learning adventure for us all,

Kim

http://www.emedicine.com/med/topic2722.htm
http://www.lymphnet.org/

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