Archive for March, 2012

How Miranda modifies

March 25th, 2012

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Posted by Karen Miranda doesn't want us to do everything for her.  No way!  She wants to do things herself, just like any other kid.  Totally understandable.  She's 7 years old, and what child at that age wants to have to ask for everything? However, Miranda's Fibrodysplasia Ossificans Progressiva means she isn't exactly like any other kid...  She has restrictions which make some activities of daily living more challenging.  She has to find different ways of doing some things, and as she grows older and taller, she develops new techniques. So what's the source of the problem?  Well, the biggest and most troublesome ...

Spotlight on young adults with FOP

March 18th, 2012

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Posted by Karen When Miranda was first diagnosed with Fibrodysplasia Ossificans Progressiva about 5 years ago, one of the many, many upsetting thoughts I had was that she'd be deprived of the opportunity to have academic or work-related achievements as an adult.  For that reason, among many others, I bawled like a baby when, about a week after the diagnosis, an adult with FOP reached out to me via the e-mail newsgroup we had just signed onto and said, "Hi!  My name is (such and such).  I have a masters degree in (blah blah), I'm employed as a (professional title), and I live by myself in ...

Why FOP is hard for control freaks like me

March 11th, 2012

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Posted by Karen I get a goodly number of ideas for blogs from bits and pieces I pick up through the Fibrodysplasia Ossificans Progressiva and rare disease communities.  Just this week, for instance, a germ of a thought started when an FOP mom I know commented, in response to one of her child's earliest FOP flare-ups, that she hoped she'd be better able in the future to recognize (and maybe minimize?) some FOP progression. It occurred to me that I remember thinking that way.  In fact, I used to be pretty determined about the very idea...  This is consistent with my personality, which has always ...

It’s time for the Jeannie Peeper Awards!

March 4th, 2012

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Posted by Karen Two years ago, the Internation Fibrodysplasia Ossificans Progressiva Association began a new annual tradition of recognizing great leaders in the FOP community.  The Jeannie Peeper Awards acknowledge and thank some fabulous people who have done so, so very much to raise awareness of FOP and funds for FOP research. If you are involved with the IFOPA, you will for sure know who Jeannie Peeper is.  ;-)  For everyone else - Jeannie Peeper is a woman with FOP who founded the IFOPA.  In the mid-1980s, having recently finished a university degree in social work, Jeannie met a doctor through the National ...