This man’s rare genetic disorder is slowly turning his muscles to bone

By Fiona Jackson via SWNS

Meet the man suffering from a one in two million genetic disorder - which slowly turns his muscles to bone.

Joe Sooch, 29, has fibrodysplasia ossificans progressiva (FOP), or Stone Man Syndrome, and has lost 95 percent of his movement.

He uses a wheelchair and needs help with everything from eating to going to the toilet.

Joe, 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."

As the disorder has progressed, Joe has experienced life with and without a visible disability, and uses his podcast to advocate for others with medical differences.

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

The condition only affects about 700 people globally, and sadly there is no cure - so Joe's condition will get progressively worse until he won't be able to move at all.

Removing the extra bones from patients surgically only seems to worsen the condition, as they tend to grow back stronger.

Joe, from Kips Bay, New York, was first diagnosed with FOP when he was just three years old, when he started to get swellings all over his body.

The genetic disorder meant that as his muscles, ligaments and tendons grew, they would slowly turn to bone and essentially freeze them in place.

“My shoulders froze when I was fiveish so I couldn’t put my shoulders up or raise my hand," he said.

“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.

“This made me made me realize I was different and that my disease was really apparent to everybody else and me in the mirror.

“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.”

His worsening condition meant that Joe couldn’t be involved in games with other children, making him feel excluded from a young age and making school difficult.

“I was different so I was always the ‘weird’ one,” he said.

"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."

Joe 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 now needs help with every element of life that involves movement, like eating or going to the toilet.

"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," he said.

"I just cried and cried and cried that night of how bad it was and how it was happening to me."

He lives with his parents who help him with day-to-day activities, but his lack of independence puts a strain on his ability to form relationships.

He is, however, looking for love.

“My dating life is non-existent, I’m just not sexually attractive and I can’t blame people," he said.

"I’m on the dating apps but never got anything, I have a great personality but a terrible body to go with.

"I’m not desperate and I’m not joining [a relationship] just because, I really do want one though!

"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."

Despite the challenges he faces, the Joe likes to see the funny side of things, and enjoys the reactions he gets when he skips the line at airports.

His biggest dream is to travel by himself around America with his camera in an RV.

“Me being solo allows me to do whatever I want, when I want," the website designer said.

"It's a lifetime dream but it’s not possible at all, I require care all the time and people just don't have the time with their full-time jobs."

Joe takes steroids when he has a muscular flare up, but apart from that does not take any medication for his disorder and prefers life that way.

He is aware there are clinical trials going on for potential treatments, but prefers not to think about those too much.

"I can’t wait forever and got to deal with the cards I have now, if I keep waiting, I might wait and then die," he said.

He started posting videos on his YouTube channel regularly in February 2020, and recorded the first episode of podcast 'Two Mics, One Joe Sooch' in July 2021.

His content includes comedy skits, vlogs about his day, discussing mental health and interviewing others with rare diseases.

“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 said.

“I have a good personality and needed something to do to utilize it - so a perfect match.”

But making yourself public on the internet does make yourself vulnerable to trolls, of which Joe is all-too familiar.

"I thrive on trolls," he said

“People will say I will die if I don't drink enough Pepsi or if I drink too much - I know how the internet works and I welcome it.

“I don't really care for people’s opinions about me so it doesn't affect me.

“My self-esteem is super high and the only opinions that matter are mine and people who are ranked higher by me.”

As Joe 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.

"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 said.

"Everybody has their challenges and such but there’s no second chance, you have to make the most of it.”