Life as a Teenager with Ehlers-Danlos

Growing up I was very active. I tried dance, swimming, martial arts, track, band, color guard and volleyball. I’ve played volleyball my whole life, but with all of my activities, no matter how careful I was, I always got injured. While playing volleyball, it got so bad that I now have a drawer full of braces for every joint. When I played volleyball, I wore ALL of my braces, but every game, I would sprain something. It wasn’t until I was in high school and I was starting color guard that something became obviously wrong. Two months before that, I had finished up my volleyball season. I took a lot of falls, but for me, that was normal. What was not normal was that when I was spinning a flag, I could feel my wrist popping and I got serious pain in my wrist. At the time, I was already diagnosed with Scoliosis, so when my wrist started to hurt, we went to my orthopedic specialist and he ordered what felt like a million scans. Within a couple weeks, he put me in a cast and told me I fractured my wrist. Then I went back to school and watched on the sidelines of the games. My coach wanted me back so even though he had a note saying I was NOT aloud to pick up a flag, he forced me to pick up a flag. This resulted in my thumb going numb and I hit my best friend with the flag. I felt so bad for hitting my friend, but when practice was done I went to the nurse who called my parents. Next thing I know, I’m back in getting more tests. My doctor then told me I had broken my thumb while in the cast. I was in this cast most of my 9th grade year. I was going through physical therapy, but was still in major pain, so my doctor ran more tests and finally told me that he though I had EDS. We were then referred to a genetic specialist who then finally diagnosed me with EDS a year later. He then told me to get tested for POTS because it’s common to have POTS along with EDS. I’m still waiting to get test but this is my story as a teenager living with chronic pain from EDS.