Stop F.O.P. with Joey Sooch
Fibrodysplasia Ossificans Progressiva, commonly abbreviated as F.O.P., is a debilitating condition that causes muscles and tendons to turn to bone. This is an extremely rare disorder, affecting less than 1,000 people worldwide, and there is currently no cure. Unfortunately, our own classmate, Joey Suchanek, is battling this horrific condition that is slowly turning him into “stone”. Any injury or even a slight knock can cause him to have a flare up, which results in extra bone growth and in some instances, it can cause his joints to become frozen in place. After meeting and talking with Joey several times, I learned that one of his biggest goals is to raise awareness for FOP, and in turn, hopefully encourage doctors and researchers to continue working toward a cure! For the remainder of the semester, Marist Fashion will have a GoFundMe page to raise money, which will be donated in Joey’s honor to a charity of his choice, and our hopes are that through this fundraiser we will assist him with his goal of raising awareness!
Below are some questions that Joey answered for us and the link to our GoFundMe page!
Are you in pain or discomfort, and if so, is it constant or just during specific times?
Whoa, many questions at once! While I am going through a flare up, the pain varies depending on the body part. It could range from level 4 to over level 13 (over 10). Without it, it’s a different kind of pain. It is more discomfort with a combination of tiredness and wanting to do stuff, but I physically can’t.
Even though there is currently no cure, is there any medical care or special treatment that you think seems promising?
Well, every time I have a flare up, you go on these trials where you can go on a double blind study and have a 75% chance of getting the medicine. While the odds are very good, there is still a chance of not getting the medicine. On the bright side, there is more hope than before to getting help then just suffering from the flare up and dealing with the aftermath.
What message do you wish to spread about F.O.P. to others who haven’t heard of this condition or met you?
To people who think I am stronger than other people, I've just been in the ring more times then everybody else. I think people are strong too. They just have yet to prove it. Our greatest enemies are truly ourselves.
Joey is also currently documenting his everyday life with this condition via youtube vlogs, so be sure to check them out:
By: Nenagh Goerg