The meaning of “rare”.

Posted by Karen - January 24th, 2016

I’ve had this experience more than once… I’ll be sitting at my computer and looking at Facebook, and my daughter Miranda will come along and look over my shoulder. She’ll ask if such-and-such friend has FOP, or if their child does. Quite frequently, there IS a connection to fibrodysplasia ossificans progressiva. I think this gives Miranda a pretty false sense of how few people in the world actually have FOP.

It’s not just Miranda, though. I often forget this myself and tend to think of the FOP community as being pretty big. And then, something happens which reminds me of the truth.

Just recently I had a moment like this. I was reading an on-line news article which featured a story about a woman who, amazingly, had managed to diagnose her own unusual medical condition. The article started to go on about how “incredibly, impossibly rare” this condition is – it has a prevalence of just 1 in 40 thousand people! Wow, astonishing and incredible that this woman should have something so unbelievably rare! Then I had to stop and sit for a moment, and think about this… And it hit me all over again. I have a child with a disease so rare that it affects only 1 IN 2 MILLION people. FOP is at least, what, 40 times rarer than the condition profiled in the article I was reading? How can this be? How can MY KID have a disease so rare that almost no-one’s ever heard of it, including most doctors? A disease so rare that there are only 2 other people diagnosed with it in my home city of 2.5 million people? (Check that out; we’ve overshot the expected prevalence here in Vancouver, ha ha.) It’s seriously mind-blowing.

This is a good thing, though – I mean the part about me forgetting how rare FOP is. I forget because the internet has connected the FOP community. I am part of a private Facebook group, several hundred strong, for people with FOP and their families. Say I’m curious to know what people with FOP do for pain relief, or if puberty is affected by FOP, or any other thing I need to know – I can go to our group, post a message and wait for responses to roll in with different people’s experiences. I can also read up about fundraising efforts which other families are doing, or learn about activities which people with FOP are involved in. I find out about the tragedies and triumphs of people with FOP. In my on-line world, FOP is not a rare thing at all; it’s something many of my friends and their families are dealing with day to day. My family is not alone, and we benefit so very much from learning from others’ experiences.

I can’t begin to say how valuable it is for our community to be connected in this way. Honestly, I thank my lucky stars that my family lives in the age of social media connection. Because of the internet generally, and Facebook more specifically, I have the luxury of mostly forgetting about the rarity of FOP, and living life as though FOP was much, much more common than it is. I know it’s kind of fashionable in some quarters these days for people to disdain Facebook, but you will NEVER catch me doing that. To me, it’s a precious gem, with worth beyond measure. It makes me forget the meaning of “rare”.

My super-duper rare girl and her equally rare friend in November 2015

My super-duper rare girl and her equally rare friend in November 2015.

 

PS 1 – To learn how to get involved in various projects to advance FOP research, go to the website of the International FOP Association at www.ifopa.org

PS 2 – If your child has FOP, is between age 6 and 14, and has a new flare up (less than a week old) on an arm, shoulder, hip or leg, or on the abdomen or chest, he or she may be eligible to take part in the current Phase 2 testing of the potential FOP drug Palovarotene. The testing involves some short-term travel to one of the drug testing sites in USA and Europe, but all travel and related expenses are paid for by Clementia Pharmaceuticals. For more information, go to: http://www.ifopa.org/drug-development/clementia-palovarotene-clinical-trial.html?utm_source=Travel+Assistance+for+Clementia+Clinical+Trial+Participants+-+pointer+%239&utm_campaign=Clementia+Travel+Assistance+%239+pointer&utm_medium=email

 

One Response to “The meaning of “rare”.”

  1. Carole Ryan says:

    It is so wonderful that Miranda and Erin are able to be friends.



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