A man is spreading awareness about living with a one in a million condition that slowly turns muscles into bones.
Joe Sooch, 29, from New York, was diagnosed with a rare genetic disorder known as fibrodysplasia ossificans progressiva (FOP) or “Stone Man Syndrome” when he was only three years old.
Since his diagnosis, he has lost 95 percent of his movement. He uses a wheelchair and needs help with everything from eating to going to the toilet and he is now opening up about living with the rare condition that slowly turns muscles into bones.
Sooch, who documents his daily life on YouTube, said: “Imagine breaking your arm and you are in a cast – but it’s permanent. Bones are just growing and locking my body into place, I can’t get surgery because more bones will just grow.”
He describes the feeling of ligaments turning into bone as “knives pushing into your muscle until it’s just solid”.
FOP is a disorder in which muscle and connective tissues are gradually replaced by bones, constraining movement. It affects only about 700 people globally and has no cure. Surgically removing the “extra” bones is also not an option as they tend to grow back stronger.
Over the years as the disorder has progressed, Sooch has experienced life with and without a visible disability and uses his podcast to advocate for others with medical differences. He said: “I’m extremely humbled to know both places and to advocate for the chronically ill and wheelchair-bound people.”
He lives with his parents, who help him with his day-to-day activities as he requires help with everything. He told Ladbible: “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,” he added.
Sooch started a YouTube channel in February 2020 where he documents his daily life. He also started his podcast, “Two Mics, One Joe Sooch,” early last year in which he has discussions about mental health and interviews people with rare conditions.
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.”
His worsening condition meant that Sooch couldn’t be involved in games with other children, making him feel excluded from a young age which affected his mental health.
He said: “I was different so I was always the “weird” one. There was a lot of depression because my body was changing drastically and I was becoming a monster. 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 has only ever broken one bone, an “extra” bone in his thigh that snapped nine years ago, which he describes as “one of the most painful things”. In that same year, he lost his ability to walk on his own, and he now needs help with every element of life that involves movement.
He explained: “When I was 20 I had a flare in my hip, thigh, and calf. I went into bed and just never was able to walk out of it again. I just cried and cried and cried that night of how bad it was and how it was happening to me.”
As Sooch has experienced life with and without a disability, he knows first-hand how different people treat you if you’re in a wheelchair and uses this knowledge to help others. He said: “I have to keep pushing as long as my health is steady because if I stop, my one year of making videos is a waste, and have to start from scratch.”
He takes steroids when he has a muscular flare-up, but apart from that, he does not take any medication for his disorder and prefers life that way. He keeps a positive attitude saying: “Everybody has their challenges and such but there’s no second chance, you have to make the most of it.”