My name is Joseph Suchanek and I have an extremely rare disease that only 800 people in the world have called Fibrodysplasia Ossificans Progressiva or FOP or "Stone Man's Disease" where my muscles and tendons turn into bone. AMA
I am a 20 years old college student that proudly attends Marist College. My left arm is frozen in a 90 degree angle and confined to my side. My right arm is also in a 90 degree angle, but I am able to fold it to reach my face and feed myself. I am unable though to stretch my arms out. When I was younger, bones grew near the ribs locking them into place. As i grew older, it caused to me to get severe scoliosis. This is a progressive disease meaning that the older I get, the worse I will become. People with FOP get these things called flare-ups where our muscles will really swell up and the bone will grow, limiting movement until the body tells it to stop. I am currently having one in my hip and thigh and it extremely painful. My chances of not being able to walk are very slim. There is currently no cure or treatment as of February 15, 2013, but there is hope because a clinical trial will start later this year. There is still a struggle and it could be years till I am able to receive the treatment.A student at my school is helping me raise awareness by doing various fundraising activities. On April 7th she is hosting a ‘Field Day’ for the student body, with all donations going to the International Fop Association for research.
However, since not everyone is able to attend she created a Fundly account to help raise donations and awareness. If you want to help in any way, big or small, please do at http://fundly.com/marist-stops-fop Here are some videos about FOP (I am not in but I have very similar features):http://www.youtube.com/watch?v=uTFbEwaSe8k
Pic of proof:http://imgur.com/QMg1MVu (guy on the left haha) Follow our campaign on: Twitter: @stopFOP Facebook page: Stop Fop (Has our event posted, ‘Marist StopsFop Follow my Twitter and Instagram at joe_sooch77 Thank you!