You probably have never met anyone like Joseph Suchanek.
That's because Suchanek, who calls himself Joey Sooch, is not one in a million — He is one in two million.
Sooch lives with an incredibly rare condition known as fibrodysplasia ossificans progressiva (FOP), a disease that affects about one in two million people globally.
According to the Genetics Home Reference, FOP is a disorder "in which muscle tissue and connective tissue, such as tendons and ligaments, are gradually replaced by bone (ossified)."
Those with the disease form bone outside their skeletons, and have constricted movement. which is why FOP is sometimes referred to as Stone Man Syndrome.
There have ever only been a few hundred cases reported.
Because Sooch is one of the very few living with this disease, he has decided to tell his story through a video series called "Fear & Strength" to help spread awareness.
"I think this is one of the hardest things I ever had to do. If you [have] known me for a week or my entire life, you could never guess what life has done to me," writes Sooch on his website. "I never had the chance to tell my story of where I've come from and why I look the way I do. I never want to bring the mood down for anyone so I never say anything. I want to tell my story so this heavy wall can finally fall."
The disease is progressive, which means it gets worse with age. Still, Sooch remains positive.
On his website, Sooch describes himself as bold, charismatic, entertaining, good-humored, creative and never taking "no" for an answer. Oh, and he also says he likes pizza and nachos.
His first episode of "Fear and Strength" gives an inside look into his daily life, and some of the struggles and limitations he faces because of FOP.
Watch the first episode of his video series here:
"I'm not on any pain medication," says Sooch in the video above. "I'm running on pure strength and motivation with a poker face of courage. I try to control many factors in my life, but my only wish is to be able to control myself."
The video is hopefully just one of many to come, as it is not only an inspiring story of of perseverance, but an important message that helps spreads awareness and understanding about FOP.