Why I like to talk to people with FOP

Posted by Karen - January 27th, 2013

Posted by Karen

Our family will be travelling a lot this year related to Miranda’s Fibrodysplasia Ossificans Progressiva… And I’m SO looking forward to it all!!  First up will be Miranda’s “Make A Wish” trip to Florida in March, then London, Ontario for a Canadian FOP Network conference at the end of May, then back to Florida in November for an International FOP Association anniversary celebration.  Awesome awesome awesome.

The Wish trip should be fantastic, and Miranda (age eight) is counting the days.  On that trip, though, we probably won’t be seeing other folks with FOP (with the possible exception of meeting the IFOPA’s founder, Jeenie Peeper, who lives not far away).  It’s the other two trips which will provide great opportunities to hang out with our FOP peeps.

What’s so special about being with others experiencing FOP (ie, inviduals and their families)?  I guess the first and most obvious thing is the simple human craving for familiarity.  This is easily understood…  Have you ever gone travelling to a place where the culture and possibly language are much different to your own, and then by chance met up with someone from your home town (or even country)?  In my experience, this leads to lots of talking to each other, discussing mutual travel plans and marveling about the coincidence of us both being there.  When you think about it, it’s kind of funny – chances are you would never have met this person at home, and if you did, you would have said a polite hello and that would be it – so why the intense comaraderie?  It’s because you’re in an environment where there’s nobody else like you, and here you’ve met up with someone who understands your situation, your expectations and your outlook on the place you’re visiting.  You’ve found someone with whom you can communicate meaningfully about a shared experience.

That’s what it’s all about when we meet FOPers (as they often call themselves).  In our daily lives, having FOP, or someone in your family with FOP, is pretty much like always being in a foreign land where no-one around you can really understand what you’re going through.  At a prevalence of only 1 in 2 million people, FOP is so rare that if it weren’t for travel and long distance communication, a person with FOP would typically expect to go through life never meeting another person with FOP.  But when people with FOP or families with a member who has FOP get to meet, we are finally with others who understand.  People who’ve been through what we have.

I remember the first time our family met another person with FOP.  Unsurprisingly, it was my co-blogger Suzanne McCloskey’s daughter Erin (and of course Suzanne and the rest of their family) in 2008.  I felt like I wanted to just sit and look at Erin for a long time, and marvel at how  similar she was to my Miranda (the girls are even the same age – both were born in 2005).  Us parents ended up talking and talking and talking, for several hours – and keep in mind, this is a family we had JUST MET.  That commonality of experience was such an unbelievably powerful thing…

Me, Suzanne and our 2 year old daughters, Miranda and Erin

We had much the same type of thing happen in May of 2009, when we met with a number of FOP families at a conference in London, Ontario.  It’s a really, really powerful thing.

There’s another reason why I like meeting up with people who have FOP and their families.  In short, it’s because it’s so encouraging.  When we first got Miranda’s FOP diagnosis when she was 2 years and 3 months of age, it felt honestly like the end of the world.  The long term prognosis for disease progression was so unbelievably bleak that it was hard to imagine Miranda ever having a life worth living.  And then, we started to get to know (through the wonder of the internet) other people with FOP and their families.  And guess what?  We were so, so wrong about how people live with FOP.  We learned that folks with FOP are the same as everyone else – they laugh, have fun, do interesting things, get educated, work, have relationships and enjoy life.  Honestly, this may sound silly, but learning this at a gut level was like being released from jail, or like suddenly being able to breathe after being almost suffocated.

Learning that FOP is NOT a sentence to a miserable and meaningless life was an extremely important part of my… “recovery” from the shock of my daughter’s diagnosis.  Today, almost 6 years later, I know full well that Miranda has (and will continue to have) a full and varied life.  But, it never hurts at all to be reminded of that fact by meeting up with other FOP families and seeing the many ways their FOP members live their lives.  For me, it’s kind of like being refreshed with positive vibes.

Miranda and Erin at Jordyn Valona's fundraiser in late 2012 - look at the grins!

Can’t wait for our Canadian FOP Network and International FOP Association gatherings later this year!


4 Responses to “Why I like to talk to people with FOP”

  1. Too bad you couldn’t book your Wish trip at the same time as the meetup. When they held the Symposium in Florida (was in ’96 or ’97) that’s when we got Chris’s Wish fulfilled. It was great, not only going to Disney World and Sea World, but getting chance to meet so many FOP families and going to the meetings booked all that 5 days. Met some great people and the kids made so many friends. It was also the only way and the only time we could ever afford it.
    Have a great time travelling, and the kids should love it all! I’m so glad to have met you and others on the IFOPA site. Makes all of us feel that little bit less lonely.

  2. Amber says:

    It sounds like you have a full year of travel ahead. I’m glad you’re looking forward to it. Enjoy!

  3. Robin L.Rice says:

    I understand just what you mean by what it means, and feels like to speak with other FOP’ers. For me, it was in late 1999, wjen I discovered tje

  4. Robin L.Rice says:

    I understand just what you mean by what it means, and feels like to speak with other FOP’ers. For me, it was in late 1999, when I discovered the IFOPA for the very first time via the internet.I was 29 years old.It just so happened, that the 2nd International IFOPA Symposium was being held in November, 2000 in Philadelphia, PA – I was 30 years old when I saw and met for the very first time in my life, another person with the exact same diagnosis, FOP, however, wen I was diagnosed in 1973, it wasn’t called FOP back then, it was MOP, or Myositis Ossificans Progressiva. As you can imagine,very, very little information was available at all, and this was way before the internet, so finding or meeting another person with FOP was impossible. We were lead to believe I was the only person alive with MOP, and I wouldn’t live much past 5, if that… It’s so awesome that I am now in contact with so many people with FOP, we all understand one another.. I’m so very thankful for this marvel of an invention, the computer and internet. I’ll be 44 this August, so it looks like I beat the odds of making it to 5!!!!!

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