EP246 The Boy Turning Into Stone | Joey Sooch

Joey is one of only 800-1000 humans to suffer the rare genetic disorder FOPsFibrodysplasia ossificans progressiva is a severe, disabling disorder with no current cure or treatment. It is the only known medical condition where one organ system changes into anotherA gene mutation affects the body's repair mechanism, causing fibrous tissue including muscle, tendons, and ligaments to become ossified, either spontaneously or when damaged as the result of trauma. Minor injuries can cause joints to become permanently fused as new bone forms, replacing the damaged muscle tissue. This new bone formation eventually forms a secondary skeleton and progressively restricts the patient's ability to move.Surgical removal of the extra bone growth has been shown to cause the body to "repair" the affected area with additional bone. The condition ultimately leaves the patient immobilized as new bone replaces musculature and fuses with the existing skeleton.During flare-ups, some patients have attempted to position their bodies in a way they would prefer to remain in permanently in order to improve their quality of life.Joey now in his 20’s, completely lost the movement in his arms as they fused into place at 8 years old . If you place your left hand on your right shoulder and hug your left ribs with your right hand you can imagine for a moment what it might be like going about daily life permanently in this position… not to mention heavily fused hips, legs and the inability to swallow.For someone facing such an incredibly debilitating condition Joey sure is making the most of what he’s got control over… he even managed to point out a few perks along the way.SPONSOR | TESTART FAMILY LAWYERSWebsite: https://testartfamilylawyers.com.auJOEY SOOCHWebsite: https://instagram.com/joeysooch/TIFFANEE COOKLinktree:  https://linktr.ee/rollwiththepunches/Website:  www.rollwiththepunches.com.auLinkedIn:  www.linkedin.com/in/tiffaneecook/Facebook:  www.facebook.com/rollwiththepunchespodcast/Instagram:  www.instagram.com/rollwiththepunches_podcast/Instagram: www.instagram.com/tiffaneeandco--- Send in a voice message: https://anchor.fm/roll-withthepunches/messageSee omnystudio.com/listener for privacy information.