Archive for February, 2017

“P” is for “progressiva”… sigh

February 19th, 2017

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One of the many frustrating things about fibrodysplasia ossificans progressiva is that a person with FOP can go months, even years, with no change in their ability to function, and then SUDDENLY lose movement overnight. That's what happened to my daughter Miranda recently. She realised about a month ago that her knee was hurting, and by the next day, she could bend it only a third of her former range. That movement is now gone for good. You probably know that FOP is all about building bone where there wasn't any before. However, it takes time for bone to grow, and it ...