Amanda H

Syracuse, NY

It took years till I was diagnosed. I believe I had lymphedema since the beginning. It would explain an incident I had when I was young on the playgrounds. So, we were playing hide and seek. I was running down the stairs and I fell. I couldn’t feel my right leg for a couple of hours. Years later I fell rollerblading and noticed my right leg was a little swollen.

It was me a 12-year-old who ask to go to the doctor because I believed something was not right. If it wasn’t for pitting in my leg, they would have me just wait till the swelling went down. It was luck and not luck to have doctors that researched. I’ve tried everything under the sun.

I would be a guinea pig if it meant that I would be cured. That is not the case. Unlucky for me medication made lymphedema increase in my left leg. It took time, but my left leg is some much better it is not an issue for now. I worked hard for compression stocking, physical therapies, and massages. I am a pro at wrapping my legs. But being a pro doesn’t mean anything. The scariest time happened to me when I was aboard in my twenties. I was worried something would happen to me, so I was proactive and had everything I thought I needed to help me. I woke up one morning got up and fell because I couldn't feel my leg. I was alone, but I did have crutches as one of the proactive things I did. So, I got myself to the bed, took a breath, grabbed my crutches and started my day.

I’ve had lymphedema for 18 years now. There have been good days and bad days. Good seasons and bad seasons, Ups and downs. Some days when walking the pain/burning happens. And some days when walking a lot, I’m like my leg is ok. So, this is my story of lymphedema that still continues …