yoocan - Joseph Suchanek - Man Turning into Stone
חיי היומיום וניידות

Man Turning into Stone

חסר תרגום בשפה עברית. מוצגת שפה אנגלית
מחלה נדירה & תסמונת

Joseph Suchanek

A Human Prison

How would you feel if there is a disease where extra bones would grow locking your body into place? Where you will wake up losing a limb's movement. One day you can move your arms freely to it being locked into a "broken arm" position. or being able to walk for miles then be stuck in a wheelchair and never walk again. 
Hey. I'm JoeySooch and I have a rare disease called FOP where my muscles turn into bones locking my body into place permanently. There are no cures and I am stuck in whatever position the body decides to put me in. My body is locked 95% and will be 99% in a few years. I can't get surgeries because surgeries will cause more bones to grow and leave me even worse.
There are a few clinical trials happening and it is amazing, but unfortunately, they take a long time to be proven safe AND helpful. The clinical trials will definitely help the younger generation who were newly undiagnosed. In my case, the damage is most likely permanent.
I want everyone out there to know, that despite what is happening to you, even when it's something like this, you do have a say in how you live your life! You can focus your mind even if your body is not cooperating. I know I can and choose to live my life to the fullest.

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