The Personal Side of Stone Man Syndrome

The everyday life of individuals suffering from Stone Man Syndrome varies. 

 

FOP does not affect brain activity, so people with it do not have any learning or working disabilities, at least, none caused by FOP.  Problems arise when the physical aspects of work and school come into play.  Students with FOP must be able to "safely access the school premises, use and manipulate the school's materials, and function academically."  People with FOP must be handled with care to prevent an accidental fall or a strain of the neck.  Many patients must travel in a wheelchair to prevent just these accidents from occurring.

 

Despite these risks, some people with FOP can live a normal life with no extreme flare-ups of bone growth.


I have found some great organizations and resources that can help families cope with FOP.
 

 International FOP Association

Eurordis

Friends of Oliver

Friends with FOP

And above all, here is a comprehensive guide over FOP, given to me by Fred S. Kaplan, the world's leading expert on anything and everything FOP.

FOP Guidebook for Families