Lymphedema is a painful and chronic condition that currently affects three million to five million Americans. It often goes unrecognized in the medical community, and because of frequent misdiagnosis, it routinely goes untreated as well.
Devon Medical spoke with Alexa Ercolano, a lymphedema advocate who started the blog The Lymphie Life to share her journey and raise awareness about lymphedema.
When and how did you learn that you had lymphedema?
I’ve had lymphedema in my right leg since I was an infant after a cast had been applied too tightly, thus damaging my lymphatic system. Although I wasn’t officially diagnosed until about fourteen years later. Growing up, I knew there was something different about my right leg because it was always bigger than the left, always a little puffy and swollen. After puberty hit and I became more self-conscious, I asked my mom’s friend – a plastic surgeon – if there were any sort of reconstructive surgery possible that could be done to fix my big foot. She examined my leg for a minute before telling me no, there was nothing she could do. I had lymphedema, and that’s fluid that is making my leg swell. I looked up lymphedema online, and I burst into tears as I read that there was no cure. I was devastated. It took me a long time to make peace with the diagnosis, and what really helped was going to a lymphedema center, where I continue to get loads of support even now years later.
What were the earliest challenges you faced adjusting to a life with lymphedema?
Buying shoes, definitely. As a child, I wore shoes in two different sizes. It was something I thought was completely normal at the time, and I suppose for some it is. As I grew older, the challenges became more prominent – feeling self-conscious, wanting to fit in, and buying clothes that hid my leg.
How has your life changed since being diagnosed with lymphedema?
It’s changed so much, and for the better too! After I had made peace with my lymphedema and started to actually take care of it, I began a blog called The Lymphie Life. Writing the blog not only helps me share my story, but it also has led me to meet so many wonderful people and hear their stories too. I’ve now got friends across the globe, and we’ve all got something in common – living with lymphedema. How cool is that? Every time someone contacts me through my blog, I’ve got a renewed zeal to take care of myself and my body because these people are so inspiring. Lymphedema can be such an isolating condition, but it makes it that much more uplifting to meet other people living with it.
What do you consider the biggest misconceptions about lymphedema?
That the swelling is fat instead of fluid. When I was younger and in my early teens, I was teased for my larger leg with one girl going so far as to say that I “wouldn’t look so fat if it weren’t for that cankle.” Obviously I never forgot that! Misconceptions like that are ignorant and can be so hurtful.
What is on your wish list for the lymphedema community?
More research and an eventual cure. Right now, the best we can do is manage our condition, but wouldn’t it be great if it could be magically fixed?
What advice would you give to others dealing with lymphedema?
Wear your compression garments! Stay elevated! Make self-care a part of your daily routine. Also, see a lymphedema therapist if you can. They are so helpful and are a wealth of information.