Man Turning Into Stone - My Conversation with Joe Sooch

Precarious

Joe Sooch is 29 years old and has been living with Fibrodysplasia ossificans progressiva (FOP) is a very rare genetic connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present such as the ligaments, tendons, and skeletal muscles. He has lost 95% of his mobility and relies on others to help him with daily functions. But, talking to him, you wouldn't know it. He has a way of living with this disease that puts it in the background which is impressive given how this has physically shaped his life. And, this is not living in denial. He very much lives in his reality. He just doesn't let the illness overshadow what's important to him. We talk about relationships, sex, podcasting and living a full and big life. Joe left a huge impression on me. I'm a better person for it.