Man Spreads Awareness of Rare Genetic Condition That Turns His Muscle Into Bone
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Joe Sooch is bringing awareness to fibrodysplasia ossificans progressiva (FOP) — a rare genetic condition which is slowly turning his muscles to bone — through his podcast and YouTube channel.
Sooch, 29, was first diagnosed with FOP or 'Stone Man Syndrome' at 3 years old, and has since lost 95 percent of his movement, as reported by South West News Service. He has created a platform to advocate for people with disabilities.
"I'm extremely humbled to know both places and to advocate for the chronically ill and wheelchair-bound people," he shared of chronicling his life on YouTube and speaking out on his podcast, Two Mics One Joe Sooch.
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"It gives me the chance to express my personality through a back-and-forth conversation instead of just talking to a camera, and to showcase other people's diseases and personalities," he added.
Suffering from a genetic disorder that affects 1 in 2 million people has been both physically painful and mentally taxing for Sooch.
The New Yorker described the sensation of having FOP — for which there is currently no cure — as "knives pushing into your muscle until it's just solid."
"Imagine breaking your arm and you are in a cast — but it's permanent," he said.
Treatment options are limited for FOP, which only affects 700 people globally. Surgical intervention — including removing the extra bone — can cause the condition to worsen as bones tend to grow back stronger.
After his diagnosis in childhood, Sooch's muscles, ligaments and tendons grew and slowly turn into bone which eventually froze in place.
"My elbows froze at around eight or nine so my left arm is in a broken arm position permanently, and my right arm is always raised," he revealed. "This made me made me realize I was different and that my disease was really apparent to everybody else and me in the mirror."
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During puberty, Sooch began to feel isolated from his peers.
"There was a lot of depression because my body was changing drastically and I was becoming a monster," he shared. "There was literally nothing I or anybody could do - I was becoming worse with developing severe scoliosis and just becoming an uglier human being,"
"I was different so I was always the 'weird' one," he continued.
As an adult, Sooch hopes to find a partner who can understand his condition and his need for advocacy.
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"I'm on the dating apps but never got anything, I have a great personality but a terrible body to go with," he said. "It's hard to meet people who have some sort of interest and harder to find someone that can keep up with me, plus loves to be on camera and be eccentric."
But he keeps a positive attitude, no matter what.
"Everybody has their challenges and such but there's no second chance, you have to make the most of it," he shared.
