Friends With FOP

I lost count on how many times I told someone that I felt like we were living a story on Mystery Diagnosis.  Lo and behold I received an email today from an associate producer from Mystery Diagnosis.  He asked permission to use some of Erin's pictures for a show they are putting together about FOP.  I was thrilled to give permission and even more thrilled to know FOP will be getting some major air time. The FOP episode will feature Ashley Kurpiel who lives in Peachtree City, GA.  She was diagnosed at 3 1/2 years old (she's 27 now).  Back then very ...

In Dr. Kaplan's upcoming annual report, there is a segment dedicated to the use of muscle relaxants in FOP patients.  Today I got a call from Rehab Medicine Clinic at Children's Hospital.  She'll be seeing a doctor in August who is acutally aware of FOP (surprise!) and treats kids with Cerebal Palsy.  There are types of muscle relaxants that have been helpful with relatively healthy muscle tissue that has shortened (as in Erin's neck muscles).  There hasn't been a whole lot of studies with muscle relaxants between flare-ups but it's worth talking to Rehab Medicine about the probability of using them. I ...