Subject: Quality of life for LE Patients
Dear Dr. Madara,
I would like to address the “quality of life” issue as it relates to Lymphedema. The repercussions of a lymphedema diagnosis are varied and specific to the patient, but they are real. Ten years ago, during treatment for ovarian cancer, a surgeon removed (among many organs) 36 of my lymph nodes, declared me clear of cancer, then sent me on my way. I had no warning, no education, and no preparation for what was to come. If he had amputated my leg and sent me on my way, one would think that barbaric! With Lymphedema it happens all the time.
Five years later, seemingly out of the blue, my leg began to swell. It became heavy and walking got harder and harder. I went to the emergency room to get checked for blood clots. I had none.
The doctor said, “Well some people just live with one leg bigger than the other.” I was speechless. How could that be the answer? After many inquiries and lots of research, I was finally diagnosed with Lymphedema. I was told it is chronic, would never get any better, and it would get worse. I was wrapped, given compression, and sent home to “self care.”
My leg is painful, very heavy, it is dangerous, hard to use, and it is unsightly. Every decision I make revolves around my leg. Am I open to infection? Will I have the stamina to carry the weight of my leg, to deal with the pain? Will I have a place to rest and treat my leg with compression? What kind of house can I live in? How will I clothe myself? A skirt will show all the compression gear, pants won’t fit over it all. One foot is bigger than the other. Do I buy two pairs of shoes or stuff the shoe of the smaller foot? What kind of seat is available? Can I put my foot up if I need to?
I even had to change my career to a more “leg-friendly” choice. I am one of the lucky LE patients. My sister, who also suffers from Lymphedema, is homebound. We are only two years apart in age but our lives are vastly different. As I said, I am the lucky one. Her Lymphedema went untreated for many years due to shame and misdiagnosis. The disease has taken hold of her completely. She has open wounds, she is immobile, she gets infections, and no one is treating the lymphedema because she can’t get to a clinic for help. Her leg grows and grows. Showering is exhausting and she is dependent on a walker. She no longer goes out, even for a simple meal, and will not have visitors because it is too much stress and she could get sick.
I realize, in these days of the pandemic, that last sentence sounds like everyone’s complaint, but that is the point. The restrictions that the people of this country are screaming about, are rioting about, are rebelling against, are the restrictions my sister lives with, and will live with, every day for the rest of her life because she has Lymphedema. I write for her. I write for myself and I write for every person with this chronic, progressive disease.
There have to be better treatments. There has to be better care. Doctors must do more about this disease because millions of Americans suffer with it every day. What is the point of curing cancer if that cure condemns us to a life of suffering with Lymphedema?
Please help us.
Send your own story directly to Dr. James Madara, AMA CEO & Executive Vice President at firstname.lastname@example.org.
Please copy LE&RN on your email (LERN@LymphaticNetwork.org). Then save a copy of your letter so that it can be sent to your national legislators during LE&RN's 2021 Action Week, March 22-26.