'You have to make the most of it' Meet the man suffering from one-in-two-million genetic disorder which is slowly turning his muscles to bone

Meet the man who has a one in two million genetic disorder – that slowly turns his muscles into bones.

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 you break your arm and you are in a cast – but it’s permanent.

“Bones just grow and lock my body, I can’t have an operation because more bones just grow.”

He describes the feeling that ligaments are turning into bones as “knives that press into the muscle until it is only solid”.

During the course of his illness, Joe has lived a life with and without visible disabilities and uses his podcast to advocate for others with medical differences.

He said: “I feel very humble to know both places and to stand up for the chronically ill and wheelchair users.”

The condition only affects about 700 people worldwide, and unfortunately there is no cure – Joe’s condition will progressively worsen until he cannot move at all.

Surgical removal of the “extra” bones from patients only appears to make the condition worse, as they tend to grow back more.

Joe, of Kips Bay, New York, was first diagnosed with FOP when he was only three years old when he began to have swelling all over his body.

The genetic disorder meant that as his muscles, ligaments, and tendons slowly grew into bones, they would essentially freeze.

Joe Sooch has progressive or ossificans fibrodysplasia

Joe said, “My shoulders were frozen when I was five so I couldn’t put my shoulders up or raise my hand. My elbows froze around eight or nine, so my left arm is permanently in a broken arm position and my right arm is always raised.

“This made me realize that I was different and that my illness was really visible to everyone else and to me in the mirror.

“Growing up my spine fused and when I hit puberty I had to grow up, but since I couldn’t, I began to develop severe scoliosis.”

His deteriorating condition resulted in Joe not being able to take part in games with other children, which left him feeling excluded from an early 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 changed drastically and I became a monster.

“There was literally nothing that I or anyone could do – I just got worse and worse as I developed severe scoliosis and just became a uglier person.”

Joe Sooch has progressive or ossificans fibrodysplasia

Joe broke only one bone, an “extra” bone in his thigh that was broken nine years ago and which he describes as “one of the most painful things”.

In the same year he lost the ability to walk independently and now needs help with every element of life that involves exercise, such as eating or using the toilet.

He said, “When I was 20, I had a flare in my hip, thigh and calf. I went to bed and just couldn’t get out of it again.

“I just cried and cried and cried that night about how bad it was and how I got on.”

He lives with his parents, who help him in everyday life, but his lack of independence puts a strain on his ability to relate.

However, he is looking for love.

Joe said, “My dating life doesn’t exist, I’m just not sexually attractive, and I can’t blame people. I’m on the dating apps but never got anything, I have great personality but terrible body at it.

“I’m not desperate and I’m not joining [a relationship] just because I really want one! It’s hard to meet people who are interested and even harder to find someone who can keep up with me, who loves being in front of the camera and being eccentric. “

Despite the challenges, Joe likes to see the fun side of things and enjoys the reactions he gets from skipping airport lines.

His biggest dream is to travel alone through America with his camera in a motorhome.

The website designer said, “Since I’m alone, I can do what I want and when I want. It’s a lifelong dream, but it’s not possible at all, I need constant care and people just don’t have time for their full-time jobs. “

Joe takes steroids for muscle wasting but otherwise does not take any medication for his condition and prefers to live that way.

He is aware that clinical trials are ongoing on possible treatments, but prefers not to think too much about it.

“I can’t wait forever and have to deal with the cards I have now. If I keep waiting, I could wait and then die,” he said.

He began regularly posting videos on his YouTube channel in February 2020 and recorded the first episode of the podcast “Two Mics, One Joe Sooch” in July of that year.

His content includes comedy skit, vlogs about his time, discussions about mental health, and interviews with others with rare diseases.

He said, “It gives me the opportunity to express my personality through talking back and forth instead of just talking to a camera, and showcasing other people’s illnesses and personalities.

“I have a good personality and I needed something to use it – a perfect complement.”

But if you do make yourself public on the internet, you become vulnerable to trolls Joe is all too familiar with.

“I thrive on trolls,” he said. “People will say that if I don’t drink enough Pepsi, or if I drink too much, I’ll die – I know how the internet works and I applaud it.

“I don’t really care what people think of me, so it doesn’t affect me. My self-esteem is super high and the only opinions that count are mine and people that I rate higher. “

Having experienced life with and without disabilities, Joe knows firsthand how different people treat you in a wheelchair and uses this knowledge to help others.

He said, “I have to keep going as long as my health is stable because if I stop my year-long video making will be a waste and I’ll have to start from scratch.”

“Everyone has their challenges and all, but there are no second chances, you have to make the best of it.”

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