Friends With FOP

Posted by Karen The world's top specialist in treating Fibrodysplasia Ossificans Progressiva, Dr. Frederick Kaplan, once said that to find a single person with FOP, you'd have to fill something like 20 football stadiums with people.  That really gives a concrete image, don't you think? At a prevalence of about 1 in 2 million people, FOP is among the rarest of the rare diseases.  To this day, almost 5 years after my daughter Miranda's diagnosis, I have a hard time grasping that my child is one in less than a thousand people in the world known to have FOP (about 3500 are ...

Posted by Karen A few days ago, I saw a video clip on Facebook with a title something like, "Sh*t people say to people with disabilities".  As you can guess, it was inspired by those numerous other clips with similar titles ("sh*t white girls say to black girls, etc).  It was funny, and all too true. Watching it made me think of the irritating things people have said to me, as the mother of a child with a disability, or to my daughter Miranda.  There are two comments in particular. The first one is along the lines of "Your daughter is an inspiration", or, even more ...

Posted by Karen Something I have to constantly adjust is the way I talk to Miranda about her Fibrodysplasia Ossificans Progressiva. When Miranda was first diagnosed at age 2, my husband and I agreed that we'd be honest with her, but at an age appropriate level.  Of course, "age appropriate" is a shifting guidepost... I think it's probably fortunate that my girl can ease into her understanding of FOP.  Given Miranda's young age at diagnosis, this is one, uh, "luxury" that we have.  I can't begin to imagine how hard it must be for those people who have normal childhoods, and then at 16 ...

Posted by Karen A few days ago our National Geographic magazine arrived in the mail.  This month, February 2012, the cover story was about dogs, and how the incredible variety of breeds of dogs has been found to be attributable to just a few genes.  If I may summarize the article, it seems that despite the fact that dogs come in so many different shapes, sizes and colours and with such varying hair lengths, hair textures, temperaments, skills, etc, there's not actually much genetic variability among dogs.  Their DNA is mostly the same from dog to dog. So what does that have to do ...