Friends With FOP

One of the best sites to find out "how stuff works" is howstuffworks.com.  I go there all the time, and found out that they have an article on FOP. This article is a straight-to-the-point summary on what FOP really is. http://health.howstuffworks.com/fop.htm One thing I thought was particularly interesting was the medications section: Aminobiphosphonates are anti-angiogenic, which means that they prevent the formation of blood vessels, which bone tissue needs to grow. They also keep too much bone resorption from happening by shortening the life span of osteoclasts. You would think that decreased bone resorption would be a bad thing in FOP, but it turns ...

The good news is that they've recently discovered the gene that causes FOP.  I'm not sure how old this press release is, though... Philadelphia, PA – Researchers at the University of Pennsylvania School of Medicine have located the “skeleton key,” a gene that, when damaged, causes the body's skeletal muscles and soft connective tissue to undergo a metamorphosis into bone, progressively locking joints in place and rendering movement impossible. Identifying the gene that causes fibrodysplasia ossificans progressiva (FOP), one of the rarest and most disabling genetic conditions known to humans and a condition that imprisons its childhood victims in a “second ...

Just browsing around YouTube I found more information about FOP.  One thing that is slightly comforting is that these kids grow up to have somewhat normal lives... which gives me hope that Erin will be ok.