“Man Turning into Stone.” Growing a Second Skeleton Where my Muscles and Tissues Turn to Bones. Fibrodysplasia Ossificans Progressiva (FOP) Ask Me Anything!
Hi guys! Joe Sooch here!
Third annual AMA
I am the “Man Turning into Stone.” I have an extremely rare disease called Fibrodysplasia Ossificans Progressiva(FOP) where my muscles, ligaments and tendons turn into bones. It only affects 900 people in the world. I was born being able to move every limb with no problem. I would get these swellings called flares where bones just start growing an and lock my body into place. I now have less than 5% of movement. It will be even less the older I get :(
Biggest accomplishment for the year was being a runway model during New York Fashion Week for adaptable fashion![https://youtu.be/OtyK-6h3h1E](https://youtu.be/OtyK-6h3h1E)
Also singing “Never Gonna Give You Up” with POTUShttps://www.youtube.com/watch?v=dQw4w9WgXcQ
See my instagram for awesome body shots and help me get to 10k!
Want to donate?Donation goal is $750. https://ifopa.salsalabs.org/joe_sooch/index.html
Ask me anything!