When I was diagnosed with my ultra-rare genetic disease Hypophosphatasia back in August 2017 I was told there was only one approved medicine to treat the disease and not every patient is eligible to get on the treatment. The main reason is that the drug is only approved for patients who have a specific form … Continue reading My Journey with Strensiq for Hypophosphatasia.
October 30th is Hypophosphatasia Awareness Day and because I was recently diagnosed with this ultra-rare genetic disease I wanted to write two posts. One to go into detail about the disease using current research, and the second post about my own journey with the disease and diagnosis. Hypophosphatasia: Hypophosphatasia=HPP Alkaline Phosphatase= ALP Hypophosphatasia (HPP) is … Continue reading Hypophosphatasia: What is it?