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A letter to the American Medical Association (AMA) from Barbara Wood

I sit writing this in a considerable amount of pain. I am experiencing a lymphedema flare, a long-lasting one that I have not been able to get under good control, despite my having spent the last two months making twice-weekly visits to my closest lymphedema clinic ( in Portland ME - a 3 1/2 hour round trip ). The lymphedema has caused swelling in the area around my elbow, causing the ulnar nerve to become compressed, complicating both conditions.

I have seen 3 doctors about the nerve compression: my pcp, an orthopedic surgeon and a neurologist. All 3 thought perhaps the compression sleeve caused the injury, but none was able to give guidance beyond telling me I had to make the swelling go down before the nerve could begin to heal. It's quite frustrating to realise that your doctors have not a clue about the disease you present with & have not a whit of medical advice to impart. But when you have lymphedema, this is a given, it's to be expected. Your main sources of information are going to lymphedema forums to ask fellow sufferers what their experience or advice might be. Hardly scientific, but lymphedema is virtually unstudied.

Ten years ago I was diagnosed with stage 3 breast cancer - my (secondary) lymphedema came from treatment. It's far from uncommon among cancer survivors. (My treatment caused radiation-induced heart disease as well. Several years ago I found I needed open heart surgery to repair a damaged mitral valve...scary in itself but even more frightening was the thought that the trauma to the chest could cause my lymphedema to spiral out of control. Fear of lymphadema superseded my fear of heart surgery.)

Lymphedema is not a rare disease, and those who deal with it on a daily basis have done nothing to bring it upon themselves. So why is it so ignored by the medical world I wonder. I can only guess that because there are no pills to take, it is simply not a financially lucrative disease - so sad. I'm hoping to see some research and progress, so many people suffer.

Thanks for the opportunity to tell my story.

Barbara Wood