I was told many years ago that I had an actual expiration date. Put that way, it makes me think of a banana in the grocery store eventually going bad. I know it sounds a bit dark, but that’s what comes to mind. When I was 18 months old, my…
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Sometimes it feels strange to write publicly about Gaucher disease because, most days, I don’t feel particularly sick. That’s not something people usually expect to hear from someone with a rare disease. There’s often an assumption that chronic illness has to feel constant and consuming, that it should always…
I’ve spent most of my life trying to blend in. As a teenager, and into my early 20s, that’s all I ever really wanted to do. At 18 months old, I was diagnosed with type 3 Gaucher disease and given a life expectancy of 12 years.
