Joe Sooch, 29, suffers from a rare genetic disease that turns his muscles into bones.
A person with a genetic disorder known as “Stone man syndrome” He talked about how that degenerative disease affects his life, having lost 95% of his movements. The case of him occurs in one in two million inhabitants.
Joe Sooch 29 years old, has progressive ossifying fibrodysplasia (FOP), which slowly turns muscle into bone. He said his “bones are growing” and “fixing” his body, and must take steroids whenever he has a muscle glow.
Unfortunately, however, there is no cure for FOP. affecting only about 700 people worldwide, as surgical removal of the “extra” bones only seems to worsen the condition, as they tend to grow back stronger.
Joe has suffered from a terrible disease since he was three.
This means that Sooch’s condition will gradually worsen and he will eventually be unable to move. Sooch, who records his life on YouTube, uses a wheelchair and needs help with everything from eating to going to the bathroom.
“Imagine breaking your arm and having a cast, but it’s permanent”Sooch said, also describing the sensation of the ligaments turning into bones “like knives digging into the muscles until it solidifies.”
Joe is 29 and practically unable to move.
Sooch, who is from Kips Bay in New York, was first diagnosed with FOP when she was three. As your muscles, ligaments and tendons grew, they slowly turned into bones and basically froze in place.
He said: “My shoulders froze when I was five, so I couldn’t shrug or raise my hand. My elbows froze around eight or nine, so my left arm is in a permanently broken position and my right arm is always up. “
“When I was growing up, my spine was melting, so when I reached puberty I needed to grow, but since I couldn’t, I started developing severe scoliosis.”
Joe records his daily life on YouTube.
Sooch felt excluded from a young age because he could not be involved in games with other children. She said, “There was literally nothing I or anyone else could do. I was getting worse by developing severe scoliosis and becoming an uglier human being.”
Sooch lives with his parents, who help him with daily activities, but his lack of independence tests his ability to build relationships. He said: “My love life is non-existent, I’m just not sexually attractive and I can’t blame people.”
“I’m on dating apps but never got anything, I have a great personality but a terrible body to go with.”
The American man suffers endless suffering.
Sooch started posting regular videos on YouTube in February 2020 and recorded the first episode of her podcast sometime later.
Her content includes comic skits, blogs about her daily life, mental health discussions, and interviews with other people living with rare diseases. She said, “It gives me the opportunity to express my personality through back and forth conversations rather than just talking in front of a camera and showing other people’s illnesses and personalities.”
Source: Clarin