Published: 03/03/2023 Tags: Stories

I will be forever grateful to have received a diagnosis

When I was two, my left elbow dislocated twice when my parents pulled me up from the floor. They thought nothing of it, as these things happen. As I got older, I injured myself frequently, often because I ran into things and fell down the stairs if I didn’t look down. My extreme clumsiness became a family joke. As a teen, I had incredibly painful “growing pains,” but never became tall. I eventually began experiencing debilitating fatigue and extreme allergic reactions.

However, it wasn’t until I was 24 that things changed drastically. I was in terrible pain all the time, my fingers would dislocate, my shoulders always slid out of sockets, my kneecaps shifted back and forth, and my hip would dislocate so dramatically that I would fall over. I went to five different physical therapists and three doctors before someone I worked with heard me tell a friend my frustrations, and she told me to get tested for hypermobile Ehlers-Danlos syndrome.

Two months later I was diagnosed. I had to quit my job, and I still deal with daily dislocations, but I will be forever grateful to have received a diagnosis and ended the two-decade-long search for answers.

Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

Related Stories

View all Stories

Sign up to The Ehlers-Danlos Society mailing list