Dear Dr. Madara:
In December of 2020, I sent the email reprinted below to you. Sadly, I received no response, and it seems that the American Medical Association has remained silent about lymphedema. Why? Perhaps no one in the association members’ families or close friends has had the misfortunate to be saddled with this devastating condition. Lymphedema patients are as deserving of a response and even more deserving of research for a cure as those afflicted with AIDS, diabetes, cancer, heart disease, and all other conditions. I beg you to please help us by showing interest in our plight. It was very discouraging to receive no response to my email below. Thankfully, Dr. Collins of the National Institutes of Health took my letter seriously, responded to it, and is devoting time to investigating our plea for research. Please do not turn a deaf ear to us.
Dear Dr. Madera:
In 2008, I had a radical hysterectomy due to a diagnosis of uterine cancer. Exactly one year later, I noticed my left leg was a bit larger than the right.
When I was diagnosed with lymphedema, I had no idea what this condition was or that there is no cure for it or of the lack of research going on in search of a cure. I had no idea then that I would spend thousands and thousands of dollars on equipment, compression stockings, and therapy. I also had no idea how devastating this condition is until my leg grew to the point of deformity. I am so embarrassed by the appearance of my leg that I no longer wear dresses or skirts. I cannot buy shoes in my usual size as my left foot would not fit in them. I no longer wear a bathing suit or even go to the beach. The physical and psychological impact lymphedema has had on me is devastating.
I have by seen by doctors who have little knowledge of lymphedema or how to treat it. I have been humiliated by doctors’ assistants who have either gasped at the difference in size between my left and right leg, or have made such rude comments as “well at least you still have your leg.” The medical community has to really step up and push for education and research. Please help the millions of Americans who are left with this unwelcome reminder of cancer surgery or other bodily trauma.
Thank you for your time.