Site Changes and Life Updates

It's been quite a while since I've published a new article here! There are many reasons for that, from a long period of extended illness (which seems to be getting under control now thanks to a change in my treatment) to sudden and very exciting new life changes that I am eager to share with … Continue reading Site Changes and Life Updates


Rare Disease Day 2019

Today is Rare Disease Day! The theme for this year is #ShowYourStripes, which I love because of its reference to the term “zebra”, which many of us with rare disorders call ourselves. This comes from the old phrase physicians turn to when dealing with patients; “when you hear hoofprints, think ‘horse’, not ‘zebra’.” This mindset (while reasonable) … Continue reading Rare Disease Day 2019