What does it do to your body?

FOP kind of gives you a second skeleton.

When you're born, your big toes show you have FOP. Your big toes may be short and curved toward the other four toes.

Your parents and doctors noticed the shape of your toes when you were born, but they probably didn't know it meant you had FOP. Some people with FOP have thumbs that are shorter than most people's.

You don't have FOP bones when you are born. They grow as you grow. Usually FOP bones start growing in your neck, back (spine), and shoulders. Later they can grow in your hips, elbows, knees, and jaw.

The muscles in your heart, stomach, diaphragm (a muscle in your chest that you use to breathe), intestines, face, and eyes don't grow FOP bones.

One bad thing that FOP bones do is get in the way of joints. Joints are the places where two bones come together and move, like at our shoulders, elbows, hips, and knees.

If FOP bones grow in your shoulder, you can't raise your arm because FOP bones are in the way. If they grow in your knee, you can't bend your knee and that might make you walk with a limp.

People who have FOP get FOP bones in different places in their body when they are different ages. My elbows were one of the first joints to grow FOP bones. When I was one year old, my elbows got stiff until I couldn't open and close my arms. But I know a man who has FOP who has been grown up for a long time. He can move his elbows almost as well as somebody who doesn't have FOP.

Different people who have FOP also have joints that are stuck in different positions.

For example, my elbows are closed so I hold my hands in from of my chest. Another girl with FOP has one elbow that's stuck wide open. She holds her arm straight down by her side.

Some people have more FOP bone in their body and more joints that are stuck than other people with FOP. Nobody knows why it happens this way.

FOP bones can also grow in muscles that aren't close to joints. Sometimes they cause lumps that stick out a little under your skin. It might happen on your back or on your head.

The lumps are normal bones that have grown in places they don't belong. The lumps won't go away, but they can change a little in size and shape so sometimes they seem to get smaller.

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