New York Man Suffers From Rare Genetic Disorder That Turns Muscles Into Bones

Joe Sooch, a 29-year-old man from New York, was diagnosed with a rare genetic disorder known as "Stone Man Syndrome" when he was only three years old. Now, Sooch is spreading awareness and opening up about living with the condition that slowly turns muscles into bones.

Sooch was first diagnosed with fibrodysplasia ossificans progressiva (FOP) at a young age, and since then has lost 95 percent of his movement and uses a wheelchair.

"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 told Ladbible.

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. This means the 29-year-old’s condition will gradually worsen and he will eventually not be able to move at all.

He lives with his parents, who help him with his day-to-day activities as he requires help with everything, right from eating to using the toilet.

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.

"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 told the outlet.

Sooch said he doesn’t feel too bothered by the trolls.

"I thrive on trolls. I don't really care for people’s opinions about me so it doesn't affect me," he said. "Everybody has their challenges and such but there’s no second chance, you have to make the most of it."