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Living With FOP

Living with FOP is no joke: this ultra-rare disease slowly replaces muscles and tendons with bone. In small and unexpected steps, joints gradually become locked in place. Your own body becomes a harness that keeps you prisoner. Eventually you will need a wheelchair. Like everybody else you want to live independently, but you know you will grow more dependent on others as time passes.

The diagnosis is often preceded by a long period of uncertainty. Parents see their toddler with a stiff neck, your child falls and the swelling doesn’t go away, your daughter falls from the stairs and can’t open her mouth anymore. What follows is a prolonged quest for answers; the disease is rarely identified immediately. There is uncertainty, lack of understanding (persistent parents are considered ‘a nuisance’) and incorrect treatment involves risks.

And once you know it’s FOP, your life will never be the same. How do you deal with such a diagnosis and poor prognosis for your son or daughter? You go looking for information, for the best medical care and support around you. With such a rare disease, peer support can be difficult to find. And by now you know it cannot be cured.

“Were you born this way?”, people with FOP often hear. It’s hard to have to keep explaining what’s happening to you. Your brain works fine but your body is imposing limitations beyond your control.

The cause of FOP was discovered in 2006: a minute change (mutation) in your genetic material that ensures your bones form normally. The mutation arises spontaneously (you don’t inherit it from your father or mother) and this change affects your bone metabolism: extraskeletal bone forms in muscles and tendons, with obvious consequences.

Now the cause has been discovered, research to find an effective drug is gaining momentum. It is good to know that two clinical trials are ongoing in the Netherlands in 2018. This offers people living with FOP hope for a better life without limitations and better prospects in life. That is a future to look forward to.

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