What WILL Happen

FOP progression is extremely variable.  Oliver has been very lucky so far with how little he has been impacted.  Without seeing his toes, you would struggle to tell.  But without a cure, the future from him and others with FOP is clear. Progressively his muscles and ligaments will turn to bone, stopping him from being able to move. A healthy mind locked inside a frozen body.

Average life expectancy for those with FOP is just over 40 years of age, and sufferers can expect to have serious restrictions within their first or second decade of life as painful swellings that look like tumors develop on the neck, back and shoulders which mature into bone.  Just as a child is discovering what they can do that is taken away from them forever.  The use of an arm, leg, or neck can be taken away from them overnight.

FOP progresses along the trunk and limbs of the body, replacing healthy muscle with bone. Bridges of bone restrict and prevent movement; surgically removing these FOP bones results in explosive new bone formation since trauma such as surgery accelerates FOP progression.

Each case is unique as FOP is extremely variable and unpredictable. Disease progression is rapid in some individuals, while in others it is gradual. Trauma to the body often, but not always, causes FOP to progress.

Many who suffer from FOP have to eventually make the decision as to whether to stay in a wheelchair at all times as their condition worsens, so that they don’t end up being locked in a straight bodied position. Others will simply wake up one day locked in a random position (perhaps the one they slept in) forever.  If that was not cruel enough, FOP also contorts the body into uncomfortable and often unpleasant positions.

Dr. Fred Kaplan of the FOP Research team at the University of Pennsylvania states, "As a person with FOP ages, slowly their ability to move is taken away from them"  and "Even seemingly minor things like preschool immunizations, injections for dental work, minor bumps and bruises from falling off a bicycle, can cause these children to lock up their jaw, lock up their joints that never move again”. 

Ultimately a person with FOP will lose the ability to move at all.  How long this takes is unknown, as the progression of the disease is unpredictable and extrememly variable.

Note: For an excellent description please see Davin Hiskey's article on "Today i Found Out" availble here.

 

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