Joe Sooch is giving a voice to those with disabilities and inspiring others to be more inclusive. The 29-year-old New York man has a rare condition called fibrodysplasia ossificans progressiva (FOP), which slowly turns his muscles into bone. Sooch uses his YouTube channel and podcast, Two Mics One Joe Sooch, to bring awareness to genetic conditions like his.

“I’m extremely humbled to know both places and to advocate for the chronically ill and wheelchair-bound people,” he said.

On his social media, Joe Sooch shares his daily routines, short skits, discussions about mental health, and even interviews with other people who have rare genetic conditions. The young man said that he likes the podcast format because it allows him to talk and get to know more people.

Sooch 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.”

Despite his rare condition, Joe Sooch doesn't stop bringing awareness to disabilities and helping others become more inclusive. (Credit: Instagram)
Despite his rare condition, Joe Sooch doesn’t stop bringing awareness to disabilities and helping others become more inclusive. (Credit: Instagram)

Joe Sooch was first diagnosed with FOP at the age of 3, and since then all his joints, muscles and ligaments have been slowly turning into bone. FOP is also known as “stone man syndrome.” The 29-year-old has lost over 95% of his movement and soon he won’t be able to move at all. He describes the sensation like knives stabbing into his muscles until they are hard.

“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 said.

Sooch’s condition is so rare that it only affects 700 people on Earth, and there is currently no cure for FOP. Surgery to remove the extra bones would only cause more pain and the rare chance that the bones would grow back even stronger.

He currently lives in Kips Bay, New York, with his parents and they help him do everything, from eating to going to the bathroom.

Joe Sooch hopes to one day find love, despite the rare condition that is slowly turning his muscles into bone. (Credit: Instagram)
Joe Sooch hopes to one day find love, despite the rare condition that is slowly turning his muscles into bone. (Credit: Instagram)

On his social media, the podcaster has many supporters who follow his journey and give words of encouragement when Joe Sooch is having a hard time. One person wrote, “I just saw your video. Stay strong you have one precious angel right next to you.”

He even gets comments from other people who have FOP. One person commented on his Instagram post and shared that she had to deal with her jaw freezing a couple years ago. The woman reassured Sooch that they could fight their conditions together.

As a child, Sooch’s condition always made him feel like an outsider among his peers. He couldn’t play games with them and sometimes he even felt like an “ugly person” because his body didn’t look like everyone else’s. Even today, Joe Sooch has a hard time dating and making friends with other people.

“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,” he said.

Despite the problems that his condition has caused, the 29-year-old has a positive outlook and hopes to one day find love.

Joe Sooch shared, “everybody has their challenges and such but there’s no second chance, you have to make the most of it.”