Joe Sooch is living with an extremely rare condition that affects just 700 people globally.
He’s suffering from a genetic disorder which slowly turns his muscles to bone.
The 29-year-old has fibrodysplasia ossificans progressiva (FOP), or ‘Stone Man Syndrome’, and has now lost 95% of his movement.
He uses a wheelchair and needs help with daily activities from eating to going to the toilet.
Joe, who documents his 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 used his podcast and channel to advocate for others with medical differences.
He says: ‘I’m extremely humbled to know both places and to advocate for the chronically ill and wheelchair-bound people.’
Sadly there is no cure and Joe knows his condition will get progressively worse – until one day, he won’t be able to move at all.
Removing the ‘extra’ bones through surgery can actually do more harm than good, 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, as he started to get swellings all over his body.
Joe says: ‘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.
‘This made me made me realise 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.’
At school he couldn’t get involved in games with other children, leaving him feeling isolated.
‘I was different so I was always the “weird” one,’ he says.
‘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.’
Nine years ago, Joe broke an ‘extra’ bone in his thigh, which was ‘one of the most painful things’.
In that same year he lost his ability to walk, so now needs help with every element of life that involves movement.
He adds: ‘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 because 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 says his lifestyle puts a strain on his ability to form relationships.
He is, however, looking for love.
Joe says: ‘My dating life is non-existent, I’m just not sexually attractive and I can’t blame people.
‘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.’
Aside from taking steroids for muscle flare ups, he doesn’t rely on any medication.
Though there are clinical trials happening for potential treatments, he prefers not to think about it 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 says.
His YouTube channel, which is full of comedy skits, interviews and vlogs, has helped him share his story.
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.
‘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 mean trolls can access you, 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.
‘Everybody has their challenges and such but there’s no second chance, you have to make the most of it.’
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