This week I couldn’t come up with a unified theme… So, I’m going to talk about a bunch of things going on recently in the Fibrodysplasia Ossificans Progressiva community.
First, in our little corner of the FOP world – a new flare-up. I keep hoping Miranda will enter one of those multi-year “remission”-like phases I’ve heard about, where the person has no flare-ups for a very long time, but so far 3 months has been her longest time flare-up free. Sigh. Anyway, earlier this week Miranda commented that her tummy was sore. She mentioned this a couple of days in a row, but since she was eating and behaving normally, I didn’t think much of it. Then, one morning while dressing her for daycare, I noted a small swelling on her left abdomen around the pelvis bone. Miranda confirmed that that’s where it hurts.
I’m used to FOP by now, but nevertheless, whenever I find a new flare-up, I feel my chest constrict and I get lightheaded for a few moments. Miranda’s not that bothered by it – in fact, she gets WAAAY more freaked out about a teeny, tiny insignificant cut on her skin (“Blood Mommy, blood!!). Fortunately, at least, this one is in an area where she can’t lose any more movement than she already has, so it won’t lead to further restriction unless it spreads – which, in fairness, it could. All we can do is wait and see what will happen, since Prednisone isn’t recommended for FOP flare-ups on the trunk, especially if you don’t know exactly when it started. We just have to keep our fingers crossed that this flare-up will resolve in a minimal way.
Here's Miranda at a recent birthday party - active as always.
On to happier things… A couple of weeks ago, the International FOP Association hosted a meeting for people with FOP in their teens and twenties. The meeting was held in San Diego. Obviously that wasn’t an event our family was eligible to attend, with Miranda being only 4 years old, but I thought it was a really great idea. As I understand it, the meeting was held at a hotel, and over 3 or 4 days, the young people met and discussed issues about FOP and youth/young adulthood. For fun, they did some things in and around San Diego, including visiting the fabulous San Diego Zoo. I’ve seen some photos from some of the attendees, and it seems to have been a very worthwhile event. People with FOP spend so much of their lives in and around others who have no idea what their experiences are like, so for the young people who attended in San Diego, I’m sure this was a great opportunity to be with peers who really “get” them.
In Great Britain, a group of FOP families have banded together and produced a new FOP website. It’s at www.fopaction.co.uk, and they’ve done a very nice job of it. The UK families’ mission is just like that of everyone else – ie, to raise awareness of FOP, educate people about it and raise funds for treatment. I give them 2 thumbs up!
Here in Canada, we’ve had some encouraging news about our Canadian FOP Network application for charity status. We can’t announce anything yet, but… Let’s just say we’re optimistic that the CFOPN will be a registered charity by the end of 2009. Charitable status is important because it will help us with fundraising efforts – we’ll be able to issue tax receipts to our donors. Good stuff.
Finally, coming back to my little corner of the world, I was recently contacted by a mother of a child newly diagnosed with FOP. I’m always so sad to hear of these new diagnoses, but on the other hand, I’m glad when families choose to reach out to each other. Having that support from others who know your experience can be so helpful.
OK, that’s all I can think of… For the coming week, please wish us luck as we go to Miranda’s regular monthly blood test while on her vitamin D regime. These blood tests are always… a challenge, to put it mildly. I probably will have to offer another bribe for cooperative behaviour to get through it. Blah!
