Overall, I was a very active and healthy kid, but looking back, there are a few signs of hEDS. My first “signs” of hEDS were that I could rest comfortably in splits and contort my body into unnatural positions. I considered my extreme flexibility a cool “party trick.”
When I was 6, I began experiencing what I called ‘brain pops.’ Basically, my head would feel freezing cold then burning hot and I would experience tingling and a popping sensation. This went on for months so my mom began to track my ‘brain pops’ to see if there was a pattern. One afternoon, I was on a dock at the beach with my mom and sister when I had a ‘brain pop’ that jolted my body off the dock and into the sand. At this point, my mom became very worried. She asked various pediatricians about this issue and had lots of testing done. My brain MRI and EEG looked normal but I was still having many ‘brain pops’ a day. We continued to see doctors about this but years went by and we got no answers. Eventually, the brain pops happened less and less often, eventually completely disappearing.
At age 8, my wrist began to bother me a lot when writing. I used special finger grips to hold pencils and tried various braces and casts but nothing really helped much. Doctors didn’t see any structural issues and after many months the pain dissipated. We never really discovered the cause of my wrist pain.
Also, I got sick a lot more often than my friends and siblings. During the winter, pneumonia, the flu, or strep throat would often plague me for weeks. It was never anything serious, but my immune system seemed to be a bit poor.
My siblings and I have played competitive tennis all our lives, so we trained multiple hours a day and did lots of fitness. From the age of 11-14, I partially tore my Achilles tendon FOUR different times and spent the majority of those years in a boot and crutches. We tried laser therapy and PRP injections but nothing worked; my parents exhausted the options.
Due to the many inexplicable injuries, Achilles tears, and ankle sprains, I’ve been in and out of physical therapy since I was 11. Each physical therapist I worked with made comments about my extreme flexibility and ankle weakness but no one considered EDS.
Other than that, I was a very healthy kid, and we had no idea that a genetic connective tissue disorder was the root of my injuries. But when I was fifteen, things went downhill pretty fast.