A flare, and a short trip to San Francisco

January 29th, 2017

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My daughter Miranda, who turned 12 a couple of weeks ago, hadn't had any flare-ups of her fibrodysplasia ossificans progressiva (FOP) for quite a while. Further, it had been about 3 years since any flare had affected her mobility. And then, all of that changed last week. It was a Thursday night, January 19, when Miranda said, "Umm, Mom, my knee kind of hurts. And also I'm having a bit of trouble with stairs." She said this in a low key sort of a way, but from experience, I know that these things can be anything but minor. I dropped everything ...

Miranda is 12…

January 15th, 2017

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Today is Miranda's "hape borfday". This was her creative spelling when, at age 4, she was determined to learn to read and write and sounded out "happy birthday" for a birthday picture she drew for me. Yes, Miranda was a smarty pants both then and now. ;-) As has been my habit, I'm going to use this opportunity to tell you about my dearest girl. Who is Miranda at age 12? First, since this is a blog about our life with fibrodysplasia ossificans progressiva, the FOP stuff. Luckily, Miranda's FOP has been pretty quiet for a few years now. Her last flare-up was ...

A word for 2017

January 1st, 2017

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Happy New Year, friends! Today is January 1, 2017, and my family members are starting to lazily wake up after a night of watching Star Wars movies (in tribute to the late, great Carrie Fisher). Later on, we'll be enjoying one last big holiday meal with my kids' grandmother. As for right now - I'm going to talk about my word for the new year... Drumroll please:  2017 for me shall be about overcoming (or at least striving in that direction). [caption id="attachment_3044" align="alignleft" width="600"] OK, this wasn't last night, but this pic of Miranda and me was taken at a holiday party.[/caption] As ...

Snow (and kids with FOP)

December 11th, 2016

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We usually don't get much snow where we live. The British Columbia, Canada south coast is much more likely to see a very rainy winter than anything else. A light dusting of snow 2 or 3 times per winter (and lasting maybe an hour at a time before disappearing) is typical. However, every now and again, snow decides to fall on us BUT GOOD. That happened this week. We had a big dump of snow on Monday, and then another on Friday. [caption id="attachment_3039" align="alignleft" width="600"] The view from our house this week.[/caption] So what does this have to do with my daughter ...

No more lab bench and lone candle, or, the latest in FOP research…

November 19th, 2016

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Back in 2007 when my daughter Miranda was 2 years old and had *just* been diagnosed with fibrodysplasia ossificans progressiva, we learned there was "a guy" researching FOP at the University of Pennsylvania. Considering how phenomenally rare FOP is, we assumed this must be a single scientist working on his own, with no support. My dad said he envisioned a doctor sitting at a lab bench, peering through a microscope to the light of a single candlestick. Kind of a Charles Dickens-esque, "Bob Crachit" type of situation, LOL. Fortunately, and to our great relief, this was incorrect. In fact, there ...

Life with FOP, age 11

November 13th, 2016

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When I first started doing this blog, my purpose was to talk about our everyday life in coping with fibrodysplasia ossificans progressiva (FOP). As time went by, though, my daughter got older and more concerned (understandably) about her privacy. As such, I turned more to talking about developments in the FOP community. I think however that every once in a while it can't hurt to talk about the challenges we face, especially if I'm careful to talk about things mainly from my perspective. And so, here are a bunch of the FOP related issues we've dealt with recently... The first thing ...

Something happened in Boston…

October 30th, 2016

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Just this week, an amazing event took place in Boston, USA. Yep, it was to do with fibrodysplasia ossificans progressiva (surprise surprise). As a board member of the International FOP Association (IFOPA), I could have attended, but I had a significant work conflict which couldn't be avoided. Then, just a few weeks beforehand, the conflict disappeared, but I found out that my long-awaited carpal tunnel release surgery was to be scheduled for a few days prior, and of course I would need recovery time. Long story short? I couldn't attend the FOP event - but wow, I so wish I ...

Clinical trial results are in!

October 16th, 2016

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On Friday, Clementia Pharmaceuticals sent out an exciting press release. This was MUCH anticipated in the fibrodysplasia ossificans progressiva community. The subject of the release was, TA DA, the results of the first ever post-gene-discovery-era clinical test of a drug for FOP! So here's the scoop... In 2014, Clementia  started a Phase 2 clinical test of palovarotene, which I will call "PV" for short (they were able to skip over Phase 1 - testing for toxicity using unaffected patients - because another pharma company had done Phase 1 while considering PV for a different disease). In simplest terms, PV has been ...

The reality of doctors and rare diseases

October 9th, 2016

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Doctors... We all need them, but when you're coping with a rare disease such as my daughter's, fibrodysplasia ossificans progressiva, the experience can be by turns incredibly great and extremely frustrating. Some doctors are rock solid and terrific, while others make you want to rip your hair out at the roots. There are no doctors in this photo, but... This was Miranda in San Francisco, where she was meeting with a really top notch physician. Let's start in the pre-diagnosis phase. So, you have a child, and the child has some strange, seemingly inexplicable medical symptoms. Chances are your child will be ...

The early days of an FOP diagnosis

October 2nd, 2016

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There's recently been a cluster of newly diagnosed people who've joined the FOP community; I learn of this when each has a family member added to a private FOP Facebook group to which I belong. Every time I see one of these newbies, which are almost always children, I'm taken back to when my family were in this situation, way back in 2007. Saying that this is a "hard time" is putting it in the mildest possible terms. There's ever so much to figure out - which, of course, got me thinking that this would be a good topic for ...
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