Moderator and Rare Disease Advocate
Joey Sooch here. I am a 28 year old NYC YouTuber and podcaster. I currently have FOP which is a super rare disease where my muscles turn into bones. There is nothing any doctor could do to help me.. I am on my own on how to cope with it.
I have my own YouTube to showcase myself, but also the disability world because you do not know about it unless you are in it. Can’t blame regular people. I also have my podcast where I talk to others with chronic illnesses or diseases or cancers or tragic stories. I bring my personal experiences and also all my guest’s experiences of how to help cope or deal with a problem.
Sometimes, there isn’t a solution and all I can do is valid their feelings and not taking crazy pills.