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  • Q&A with Australian Health Practitioners

    How serious is fibrodysplasia ossificans progressiva?

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    Congenital & Genetic Conditions Fibrodysplasia Ossificans Progressiva
    Our child has fibrodysplasia ossificans progressiva and we have noticed bone growing at the arms, shoulders and neck (originally we were worried it was cancer). How serious is this? Will bones continue to grow? Will this condition affect ability to move as he grows?
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    • ellekaling3
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    ellekaling3

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    Unfortunately Yes to all 3 of your questions. I have been told my son may have fibrodysplasia Ossificans Progressiva also and have been doing research on the subject. I would suggest joining ifopa.org website (International Fibrodysplasia Ossifican Progressiva Association)  where you can find help & support from other families affected by the disease. I'm not sure how long ago this question was posted I only came across this while searching for any other families in Australia affected by fop.

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