Archive for October, 2018

Ack, our doctor’s retiring! Or, why TOP physicians are vital for rare diseases…

October 14th, 2018

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Twice recently my daughter has had a physician retire on her. The NERVE, how dare they! Don't they know we need them?? All joking aside, heaving a really good doctor is so very, very important for people with rare diseases. We know from experience, since my 13-year old daughter has fibrodysplasia ossificans progressiva (FOP), a disorder which affects about 1,000 people known to medical science. [caption id="attachment_3241" align="aligncenter" width="600"] My Miranda, age 13[/caption] We have been extremely fortunate to have 2 local treating physicians, our family doctor and our pediatrician, who were really just the best. In the case of rare diseases, ...