April 23rd is officially FOP Awareness day!

[Blight]

Please help spread the word about FOP, and prevent more misdiagnoses! (FOP is offen mistaken for cancer and biopses/amputations leads to catastrophic results)

http://www.fopfriends.com/fop-video explains FOP, narrated by Stephen Fry 🙂

[Lauren]

A friend of mine teaches at a disability school here in Japan, and one of the children she works with suffers from this condition. He’s not even out of middle school yet and he’s wheelchair bound; even the slightest bumps and bruises cause bone growth. It’s so sad and frightening. My heart really goes out to the people who are affected by this disorder.

[Blight]

Oh, cool; is he in the Facebook of Yahoo Groups IFOPA? I might know him by chance. My twin and I have FOP.

We were lucky, I guess; some FOPers are wheelchair bound by the age of 2, some don’t reach that stage until they are in their 50s 🙁

[Scathach]

What is FOP?
I don’t have time to look at a video.

Life is beautiful.

[jmoore]

What is Fibrodysplasia Ossificans Progressiva (FOP)?
One of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.

[Scathach]

Thanks, jmoore.
It certainly sounds horrible.
I know about Myositis Ossificans, but that is relatively small and able to be dealt with surgically compared to this.

Life is beautiful.

[Blight]

Thanks, jmoore.
It certainly sounds horrible.
I know about Myositis Ossificans, but that is relatively small and able to be dealt with surgically compared to this.

Yeah. FOP has a sister disease, in which the skin turns to bone.

The international website was listed in the video and on Oliver’s website, too, ifopa.org

[Author]

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