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A man with a one in two million genetic disorder known as ‘Stone Man Syndrome’ has spoken out about how it affects his life, having lost 95 percent of his movement.
Joe Sooch, 29, has fibrodysplasia ossificans progressiva (FOP), which slowly turns his muscles to bone.
He said his ‘bones are just growing’ and ‘locking’ his body into place, and has to take steroids whenever he has a muscular flare-up.
However, there is sadly no cure for FOP, which only affects about 700 people globally, as removing the ‘extra’ bones via surgery only seems to worsen the condition as they tend to grow back stronger.
This means Sooch’s condition will gradually worsen and eventually he'll be unable to move altogether.
Sooch, who documents his daily life on YouTube, uses a wheelchair and requires help with everything from eating to using the toilet.
“Imagine breaking your arm and you are in a cast - but it’s permanent,” Sooch said, also describing the feeling of ligaments turning into bone ‘as knives pushing into your muscle until it’s just solid’.
Sooch, who is from Kips Bay in New York, was first diagnosed with FOP when he was three years old. As his muscles, ligaments and tendons grew, they slowly turned to bone and essentially froze in place.
He said: “My shoulders froze when I was five-ish so I couldn’t put my shoulders up or raise my hand.
“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.
“When I was growing up my spine was fusing, so when I hit puberty I needed to grow upward but, since I couldn’t, I started developing severe scoliosis.”
Sooch felt excluded from a young age as he couldn’t get involved in games with other kids.
He said: "There was literally nothing I or anybody could do - I was becoming worse with developing severe scoliosis and just becoming an uglier human being."
Sooch lives with his parents, who help with day-to-day activities, but his lack of independence puts a strain on his ability to form relationships.
He said: “My dating life is non-existent, I’m just not sexually attractive and I can’t blame people.
"I’m on the dating apps but never got anything, I have a great personality but a terrible body to go with."
Sooch started posting regular videos on YouTube in February 2020, and recorded the first episode of his podcast Two Mics, One Joe Sooch in July this year.
His content includes comedy skits, vlogs about his day, discussions about mental health and interviews with others with rare diseases.
He said: “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."
Sharing your life on the internet does, of course, make you vulnerable to trolls, but Sooch said he doesn’t feel too bothered.
"I thrive on trolls," he said. “I don't really care for people’s opinions about me so it doesn't affect me."
Joe concluded: "Everybody has their challenges and such but there’s no second chance, you have to make the most of it.”
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