Crazy FOP statistics

Posted by Karen - October 24th, 2010

Posted  by Karen

We recently got a letter reminding us to renew our membership in the International FOP Association (IFOPA).  The IFOPA is the biggest FOP-related organization in the world; the first one you would ever go to for detailed and reliable information about all things connected to Fibrodysplasia Ossificans Progressiva.  Anyway, I sent off our renewal, and this week the IFOPA sent us something new which they’ve created, which is a “new members” folder containing a number of documents, including the first ever IFOPA Annual Report (2009), the most recent annual progress report produced by the FOP lab at UPenn, and a few other things. 

Of course, we aren’t new members, since we joined the IFOPA in 2007, very shortly after Miranda’s diagnosis.  However, I think the IFOPA wanted to show us what they’re now sending new members, which is why they sent us this package.

The IFOPA annual report has an intriguing page with the title, “Global Impact” (page 13).  On that page, there’s a map of the world, and a list of all countries with IFOPA members who have FOP.  Next to the name of the country, the IFOPA has indicated the number of people so affected in that nation.  There are some interesting things revealed by this list. 

First, I note that there are “FOPers” (as people in the FOP community often call them for shorthand) in 58 different countries.  That makes it sound like there are lots of folks with FOP, doesn’t it?  Well, if you had that impression, you’d be WRONG!  In fact, there are only 478 people with FOP who are members of the IFOPA, and I’ve heard elewhere that there are roughly 700 known cases of FOP worldwide (obviously a number of known FOPers are not members of the IFOPA, for whatever reasons – I think the figure of 700 comes from the UPenn lab).  It still blows my mind to think about that.

Second, what’s even more interesting to me is the breakdown per country.  We are told that the prevalence of FOP worldwide is something like 1 in 1.5 million to 2 million people…  Applying that statistic to the world population, we should expect that there are about 3,500 FOPers worldwide.  So, this means that the vast majority of people with FOP have either not been diagnosed, or else their FOP status is unknown to the IFOPA.  The numbers are pretty stark…  700 known cases, in contrast to about 2,800 not known to the IFOPA.

When you look at the breakdown of numbers per country, it’s pretty clear where all those unknown cases are.  Some countries have pretty close to the number you would exactly expect, based on their populations.  The USA, for instance, has 182 IFOPA members with FOP, and Canada has 15 (interestingly, the document lists 12 – I know of 1 other FOPer who’s not an IFOPA member, but am wondering if the other 2 are unnaccounted for my mistake, or if they’ve now passed away…).  Brazil has 57, the UK 33, Germany 26, France 14, Sweden 12, Argentina and Australia each have 11.

There are, however a number of countries with huge populations, but very few known people with FOP.  The IFOPA has highlighted this very point on that page, noting that China has 1.34 billion people, and so should have about 870 people with FOP – and yet, apparently the IFOPA has only 1 Chinese member with FOP!  Similarly India has 1.16 billion people and so should have 775 known cases of FOP, and yet there are only 6 Indian IFOPA members with FOP.  Another one I note is Russia…  I’m not sure what the Russian population is, but I’m sure it’s over 100 million, which means there should be at least 50 in Russia, and yet there are only 2 known FOPers who are IFOPA members.

Those are some really amazing figures.  Yes, it’s possible that (as I noted above), there may be some people in those countries who know they have FOP but have not made themselves known to the international FOP community.  However, my expectation is that such numbers would be small.  FOP is such a rare disease that affected people tend to want to make connections between themselves.  Most people don’t want to feel alone.

80% of people with FOP are not known to the IFOPA…  It boggles my mind.

2 little girls with FOP, who are lucky to have their medical needs known...

2 little girls with FOP, who are lucky to have their medical needs known...

One Response to “Crazy FOP statistics”

  1. Amber says:

    Wikipedia says that Russia has 142 million people. :)

    It’s pretty stark to consider the number of people with FOP who don’t know it. I imagine the same is true for a number of rare conditions in developing nations. It just drives home how fortunate we are to live in the place that we do.



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