"I can't move my left arm from my side at all, I have very little neck movement, no lower back movement at all, my right hip is affected, and my upper back is really stiff," Kurpiel said in an interview with ABC News. While appearing on the Tyra Banks show, she stated that it is "like being claustrophobic in your own body."
Now, at the age of 28, she continues to become more and more immobile, but stays hopeful with a positive attitude. She is a member of the IFOPA-International Organization that supports research for cure of FOP. "A cure is right around the corner," she says. Just to see Ashely's strength as she battles this disease should give hope to anyone going through adversity.
To read Ashely's blog: go to: http://ashleykurpiel.blogspot.com/