Non Binary, Transgendered Advocate with 3 Rare Diseases: Cervical dystonia, EDS n Meneire’s disease

Meet Carter. A non-binary, transgendered advocate for her rare diseases: Cervical dystonia, Ehler-Danlos Syndrome and Meneire’s disease. Played a game of which disease he wouldn’t want and talk about(I explain the diseases in episode). Talk about being transgendered and how it affects your psyche, but also getting treated differently for his diseases. Ask “What’s more difficult, being transgendered or having the rare diseases?” Talked about feeling different and not feeling fully part of woman or manhood. Learning about transgenderism at 13 while I thought girls were blah. Growing up with the internet helped find his true self and find others with similar experiences. Extra set of challenges of being transgendered to being a transexual which requires surgery/hormones. Finished up with the importance of the STAT Act to create an agency to distribute money towards research for rare diseases.
/ carter_cricket
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I'm Joe Sooch. I have Fibrodysplasia Ossificans Progressiva(FOP) where my muscles, tendons, and ligaments turn into bone. I get flares/swelling all over my body that can last a month to 2 years and bones will form thus locking my body into place. It is extremely rare with about a thousand cases on the planet. I am basically 95% disabled and permanetely in a wheelchair.