About Me — Carter Hemion

I am a rare disease and LGBTQIA+ advocate and writer!

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I am a writer based in the Pacific Northwest. I joined Medium to create a personal blog to share my stories and to write about the topics that matter most to me. These include issues like LGBTQIA+ equity and rare disease advocacy because of my personal experiences as a queer and non-binary person with multiple rare diseases. In my case, most of my rare diseases are related to being born with classical Ehlers-Danlos syndrome — I have a rare gene variant that affects type V collagen and has a multi-systemic presentation.

Rare disease advocacy matters to me because I went undiagnosed for 20 years wondering why I felt different. I didn’t get diagnosed with Ehlers-Danlos syndrome until I had dropped out of university, was stepping back from an editing job, and needed multiple surgeries for joint problems. It took another year before I accessed genetic testing to confirm I have the classical type and to finally know the gene variant behind my symptoms. By the time I had an answer, I had developed many comorbidities and complications, some of which are also rarely diagnosed.

Learning I have a lifelong genetic connective tissue disorder that will continue to cause new and worsening symptoms was the easy part of my journey — after spending most of my life being told I…