Friends With FOP

Posted by Karen

When your child has just been diagnosed with Fibrodysplasia Ossificans Progressiva, you hear a whole lot of doom and gloom…  “One of the most disabling disorders known to mankind”, “horrific disease”, blah blah blah.  All that stuff is very, very hard to take.  You feel like your child has been handed some sort of biological prison sentence, and that it’s nothing short of a disaster.  You feel like no-one has a bigger burden to bear.

It eventually happens, however, that you get a bit of distance from the diagnosis.  And, you begin to realize after a while that compared to some other disorders out there, FOP is maybe, just maybe, not quite the end of the world.  To quote the mother of a teenage boy with FOP who was diagnosed at age 3, “I found a lump in my little boy’s abdomen, and I found myself hoping it was ‘only’ an FOP flare-up.  There are worse things than FOP.”  (Footnote – in that instance it was FOP, and not a tumour of some sort.)

While acknowledging that FOP is definitely not something you want for your child, and that it is a serious disorder, why isn’t it “the worst genetic disease in the world” (to quote what another parent was told)?  Here’s a bunch of reasons, in no particular order of importance:

- FOP doesn’t happen all at once.  There can be months, or even years in between flare-ups of FOP, and during those breaks, FOP does not progress.

- During childhood, most people with FOP walk without difficulty, and can do most of the things other kids do.  Some are even lucky enough to escape ANY physical restrictions until their teen years (neither Miranda nor her friend Erin have been so lucky, but I know there are some in that boat).

- FOP doesn’t affect the mind.  Kids with FOP have the same ability to learn as any other child.  As a result, people with FOP have had achievements such as earning university and graduate degrees, working, successfully running their own businesses, volunteering, and more.

- FOP generally doesn’t cause illness requiring hospitalization, or painful and difficult treatment procedures.

- While FOP does have a reduced life expectancy (median age 41 years), it’s not a given that a person will die young from FOP.  There are people with FOP in their 50s, 60s, and 70s.  One man with FOP who recently passed away was 80 years old.

- And, last but certainly not least, the FOP community has a whole whack of researchers working on designing and testing medications to treat FOP.  While there are no consistently reliable drugs forFOP at present, research is currently galloping ahead at a furious pace, and I’m led to understand that there’s an excellent chance of effective treatments being available within the next several years.  (Shameless plug: PLEASE PLEASE donate to the Canadia FOP Network and International FOP Association to keep research driving forward!!)

By contrast, there are disorders which cause relentless physical deterioration.  Some cause dreadful illness and require painful treatments.  Some cause death in childhood or early adulthood.  There are disorders which cause mental disability, or deterioration in mental capacity.  Many disorders have no research being carried out, and sufferers have little or no hope of any treatment.  While families can, and do, cope magnificently well in the face of such problems, I’m going to tell you honestly that I’m relieved we don’t face those issues with FOP.  Of course, there are probably parents of kids who do have such problems, and maybe they hear of FOP and think, “Well, at least my child doesn’t have something like FOP” – and you know; fair enough.  I guess my point is, even with Miranda’s FOP, I feel like there are reasons for us to feel like the world isn’t ending.

I had an experience this past week which got me thinking about this issue.  I had occasion to be involved in a support group for parents of pre-school age kids with disabilities.  There were about 10 or 12 parents present.  As it happened, every one of those parents other than me has a child with some form of developmental disorder (ie, autism, cognitive delay, etc).  The discussion ranged from topic to topic, including sleep issues, worries about coping in kindergarten, communication problems, behaviour issues, and worries about being mentally incapable adults.  It turned out that, interesting while it was, very little of it had relevance to our experience with Miranda’s FOP.  I found myself feeling relief that Miranda can think and express herself well, and that I have few fears about her ability to thrive in school (and those fears I do have are around safety, not capability).  It was  an odd feeling, to be able to sit there and think about problems FOP doesn’t cause for Miranda.

Bottom line – yes, FOP sucks, but people with other disorders face issues as bad as, or sometimes worse than, the effects of FOP.  It’s not the only bad thing out there.

Here's my bright-eyed and happy girl, enjoying herself on a horsie toy at the playground.