Archive for December, 2010
An alternative way to vaccinate
December 28th, 2010
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Posted by Karen
One of the many problems caused by Fibrodysplasia Ossificans Progressiva is that if you have FOP, you can't get vaccinations the usual intra-muscular way. Doing so puts you at risk of FOP flare-ups, as the body may treat the intrustion of the needle into muscle tissue as a form of trauma requiring "repair" with new bone tissue. Because of this, vaccinations have to be given orally, nasally or via sub-cutaneous injection (and not all vaccinations are safe using those methods).
However, a new option appears to be on the horizon... It seems there's a novel immunization method being developed which ...
The holidays, and no flare-ups!
December 28th, 2010
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Posted by Karen
Hey folks, here I am again. My usual weekly blog is a few days late because, to quote Bob Cratchit, "I was making rather merry..." ;-)
We've had a great set of holidays so far. My kids have two full weeks off school, and I've been (mostly) taking the same days off work.
One thing which made this time good is that something I was worried about has thankfully not come to pass. If you read this blog regularly, you may recall that Miranda had a set of about four separate falls over a couple of days during her last week ...
Fun, and not as fun
December 19th, 2010
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Posted by Karen
This week was a mix of good and bad. First, the bad... After a really long stretch of no falls and being very steady on her feet, Miranda had a cluster of tumbles this past week. She needs to avoid falls, of course, because of her Fibrodysplasia Ossificans Progressiva - traumas, even fairly minor ones, can cause FOP flare-ups which lead to new bone formation. It's not a given that a fall or other trauma will cause a flare-up, but it often happens.
The first incident happened, if you can imagine, a few days ago while Miranda was sitting at ...
FOP and the flu – oh no a shot!!
December 12th, 2010
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Posted by Karen
Ah yes, it's that special time of year... No, I'm not referring to Christmas, but rather flu season! Sigh. I'm pretty sure I blogged on this subject last year around this time, but oh well, here I go again.
Getting the flu is a matter of some concern for my daughter Miranda, who has Fibrodysplasia Ossificans Progressiva. The flu can be a problem for people with FOP for a couple of reasons. For one thing, if FOP has progressed pretty far and the person has restricted chest expansion, the flu could make you sick enough to have trouble breathing and thus ...
Grab bag of FOP news…
December 5th, 2010
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Posted by Karen
I don't have a nice, consistent theme for my blog today. Instead, am just going to ramble about various stuff that's happened recently in the Fibrodysplasia Ossificans Progressiva community.
First, our beloved Jeannie Peeper was recognized for her important work in founding and developing the International FOP Association (IFOPA). Jeannie herself has FOP, and as a young woman, she had no connections with others who have the disorder. When she found a doctor with other FOP patients, she reached out to them to start a "pen pal club" (that sounds really "old school", I know, but it was just ...
