What is FOP?

FOP stands for Fibrodysplasia Ossificans Progressiva, which is a very complicated name to remember.

FOP is a disease that causes extra bone to grow in a person's body.

FOP bones are regular bones. They're just in the wrong places. They grow in your muscles, like in your back, shoulders, arms, and legs. They also grow in "connective tissue," which connects your muscles to your bones. The FOP bones make it hard to move. You could say that your body is growing another skeleton, an FOP skeleton, along with the regular skeleton you were born with. If you count how many times one of these words is in this book ... probably, usually, sometimes, some, seems to, often, might, could ...it would "probably" be 100 times. That's because every person who has FOP is different. Flare-ups aren't all the same. Some people grow more FOP bones than others.

But even though we're different in some ways, we have a lot in common. The authors hope that this book answers some of your questions and gives you ideas about where to find more help as you adjust to living with the mysterious condition we call FOP.

Go the next chapter How did I Get FOP?

Go to the Youth Page