Finally having a name for my issues gave me so much relief

Posted January 7, 2021

Sophia wears a red dress and is standing in front of a large hedge. She has a red bow on her head and is holding some red tulle

Ever since I was young, I was always “different”. I amused my friends and adults by contorting my body into weird shapes. The hyperextension in my arms, abnormally long fingers, and height, in particular, were things that people would often comment on.

Starting around the time I was about 12 or 13, I started having weird symptoms. My heart rate would randomly skyrocket and I would have to sit down for fear that I would pass out. I was a dancer at this point, and these attacks made it so I suddenly couldn’t make it through an entire rehearsal. This, in combination with when I dislocated my right hip, led to me making the difficult decision to stop dancing.

In seventh grade biology, we learned about genetic disorders. We went over Marfan syndrome. The video we watched went over symptoms and showed a woman doing fun tricks. I matched the height, the long limbs, the flexibility, the bad teeth, and eyesight, and slowly the entire class started looking at me. That day I asked my parents if I had Marfan’s. This led to a workup that culminated in a diagnosis of tachycardia arrhythmia and an unspecified connective tissue disorder when I tested negative for Marfan syndrome.

As I got older, many of my symptoms got worse. More fatigue, more episodes of tachycardia, more joint pain, and it was frustrating because I had no idea why. Finally, in the summer of 2020, I learned about hypermobility spectrum disorder (HSD) from a YouTuber I watched. As she detailed her symptoms, everything started to click. After doing some research, I delved back into the world of workups for a diagnosis. I was referred to a geneticist who specialized in Ehlers-Danlos syndrome and was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) that day. 

I was so relieved to finally have a name for my issues that I actually started crying. He referred me to The Ehlers-Danlos Society and I was able to start caring for my body better. I was prescribed beta-blockers for my tachycardia (which is likely PoTS), which have worked wonders. Although this was only four months ago in August of 2020, I find it so important to share my story and spread awareness of chronic illness and hEDS in particular. Had I known what I had when I was younger, I would have known better to not push myself beyond my limits. It would have saved me so much anxiety. 

For a long time, people would tell me that I must be faking my symptoms to be lazy. After a while, I started to believe them and questioned if I was just exaggerating. Now I know that I’m not. The EDS Society has been such a wonderful resource for me to learn more about my disorder and find other people who struggle with similar symptoms. I feel so much less alone. I hope that as we build awareness, more people with EDS can find out, get diagnoses, and hopefully get treatment.

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