Finding people with FOP

Posted by Karen - January 13th, 2019

Hello friends, and happy new year!

It’s 2019, and time for my first post of the year. I was oh-so-very lazy over the holidays; didn’t do a single one. Time to get back in the saddle.

Today’s theme is:  Let’s try and find all the missing people with FOP. OK, that’s kind of a cryptic comment! I’ll unpack it a little…

It’s to do with statistics. See, the conventional wisdom of the past several years has been that 1 in 2 million people has fibrodyplasia ossificans progressiva. This is based on population prevalence in the western world – ie, USA, Canada, Europe, Australia/New Zealand, and Japan. For instance, let’s take Canada, where I and my family live. The Canadian FOP Network (our FOP organization) is aware of roughly 15 to 18 Canadians with FOP; this is a bit imprecise because I think one or two have died in the past few years, and there are also a couple of people who we know exist, but we don’t have any details about them. Anyway, this seems more or less correct, given that Canada has close to 37 million people. (Aside – interestingly, recent studies in Europe suggest that the prevalence might be more than 1 in 2 million, but as far as I know, the old statistic is still the one the experts cite.)

Now, if the prevalence is known for western world countries, what about elsewhere? Scientists have no reason to think there are fewer or more people with FOP per million population in other areas, but for one factor… It turns out that actual numbers of people known to have FOP in other parts of the world are often much, much lower than 1 in 2 million. Take India, for instance. There are roughly 1.4 billion people in India, meaning that there should be about 700 Indians with FOP, and yet the International FOP Association (IFOPA) is aware of less than 100 (I think the actual number is less than 30, but I’m not certain so will go with 100). Do some or all of the missing 600+ people have an FOP diagnosis, but no way to connect with the larger community? Or, even more likely, are most of them undiagnosed, and just living with all of the fear, worry, and uncertainty of the disease but absolutely no understanding of what’s going on? There are similar sorts of numbers in China, Asia, Africa, and to a somewhat lesser extent, South America. In fact, with a world population of 7.5 billion people, there should be about 3,750 people in the world with FOP – despite this, the IFOPA and medical experts are only aware of 1,000. There are 2,750 missing people with FOP, or almost 2/3 of the projected FOP population. I find this number staggering.

Imagine how the world would change for the missing FOP patients if they had an accurate diagnosis and connection to the greater community… In addition to the relief of understanding what’s happening to them, the ability to take the necessary precautions to live and thrive with FOP, connections with FOP families worldwide, and the possibility of access to knowledgeable medical experts, these people may also benefit from the explosion in new potential drug treatments. There is so very much to be gained for undiagnosed and unknown FOP patients.

As it happens, there are people trying to change the situation. An American FOP organization, the Radiant Hope Foundation, is working with a South African media company called Blink Pictures to produce a full-length documentary about FOP. The final product will explain to people what FOP is, what to look for in terms of symptoms, and how to get in touch with the FOP community. When finished, the plan is to begin by showing the documentary in villages, towns and cities throughout Africa, and later, other parts of the world. The project is being referred to as the “Tin Soldiers” documentary.

So far, there is a Tin Soldiers trailer, a short clip designed to introduce the project and hopefully raise funds for the full production. To learn more, and to donate to the project (like I did!), click here: https://ifopa.salsalabs.org/TinSoldiersProject/index.html. If you’d like to see the video trailer, search for “Tin Soldiers” on Facebook and seek out the post dated November 12, 2018.

Not everyone with FOP is as lucky as my daughter Miranda, who is just a few days shy of her 14th birthday. Here’s hoping the Tin Soldiers project will help find more FOP patients worldwide.

Miranda, December 2018

Miranda, December 2018

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