Where do I begin? I was diagnosed with hypermobile Ehlers-Danlos syndrome in May 2021 amidst the pandemic. I was 34 years old. Like many other people living with EDS, I was told my problems were all in my head.
I didn’t have a very common situation growing up. My youngest brother was diagnosed with Neurofibromatosis 1 at the age of 5. By the age of 7, he had gone completely blind from an inoperable optic glioma. I was 14 when he was diagnosed. I dropped out of high school in 8th grade and started painting houses with a local contractor.
Fast forward a few years; I found myself working in a custom cabinet shop. Not ideal at all! I started developing carpel tunnel in both wrists at 27 years old. There were times that I couldn’t lift a coffee mug the pain was so bad. What was I going to do? This is what I had most experience with.
Come December 2016, and my thoracic 9 disc herniated into my vertebrae. This sent my entire universe into a world of pain. After several years of physical therapy, and losing my job. I started pursuing doctors for answers. It wasn’t like I had never been to the doctor for my issues. It was just always chalked up to be no concern.
It wasn’t from going to doctors that got me diagnosed. Instead it was someone I had met through playing music that was advocating on social media. I started looking into EDS, and everything clicked. It wasn’t till I knew what to show my doctor that I was diagnosed. The importance of advocating!
Being diagnosed was a really hard time for me. I had a lot of memories of my life flooding my head. I was unable to do the creative things that I love. It’s very important for people living with EDS to know that they have EDS. I hope to help others, so they won’t have to go through some of the trauma that I did…Music and artwork [and of course my dog Ember] are some of the few things that keep me from getting depressed.
I am fortunate to have a family that supports me. I know that not everyone has that. I finished my associates degree Performing Arts in 2019 with honors. I currently work on writing Gypsy jazz inspired music, and hand paint leather jackets/vests. On occasion I’ll build a small piece of furniture. It’s just not good for my body. I would like to thank all those out there advocating. I’m not sure where I would be if I still didn’t know what was happening to me.
