Hi, my name is Joshua Scoble and I am six years old. I was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) when I was only three months old. FOP is a very rare inherited connective tissue disorder. Specifically, this disorder causes my body’s skeletal muscles and soft connective tissue to undergo a transformation into bone, progressively locking my joints in place and making movement difficult or impossible. There are less than 700 confirmed cases of FOP worldwide.
My shoulders and neck are now fused. Anytime I have trauma to my body, such as tripping, bumping or injections, I am at risk for a "flare up". These "flare ups" cause me to swell and then it turns my affected muscle into bone. Since FOP progresses differently for each person, we just don't know how long it will be before I lose my joint movements.
Joshua’s FOP is a non-profit organization set up by Joshua Scoble’s family in an effort to raise awareness and funds for FOP research, as well as to help support families affected by FOP. With your continued support a cure is within reach! There have been some recent findings in FOP research, and a treatment is currently under development!
For more information about FOP please visit the IFOPA Web site at www.ifopa.org.
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