This week I’m talking to Joe Sooch…
Joe is a podcaster and YouTuber who lives with an extremely rare genetic condition, called fibrodysplasia ossificans progressiva, or FOP, in which fibrous connective tissue such as muscle, tendons, and ligaments turn into bone tissue.
It’s progressive, meaning it gets worse over time, it’s the only known medical condition where one organ system changes into another and it’s so rare that only around 800 cases have been confirmed worldwide.
Joe is only 29, but he’s now at the point where most of his major joints have fused, losing 95% of his ability to move. This means he now needs round-the-clock care.
Joe hasn’t let living with a progressive, chronic condition stop him live life; he has a growing YouTube channel, a podcast called Two Mics One Joe Sooch and he connects with people all over the world to raise awareness of other disabilities and rare diseases.
Joe's YouTube Channel - youtube.com/c/JoeSoochh
Joe's Podcast - Two Mics One Joe Sooch
Joe's Instagram - @joesoochh
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