Tag: Rare Disease

Life with a rare disease

The Pain of Rarity

This hell? One in a million.

Technically, it’s more like 26 in 100,000. (For reference: a disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000, in the USA when it affects fewer than 200,000 Americans at any given time).

I don’t know how to write about this disease without it sounding like a melodramatic Thought Catalog piece. A bit of pain. Some pithy statement about rarity and diamonds and blessings. Maybe a little angst (perhaps anger?). And ending with hope. Sometimes that hope is real, sometimes it feels a wee bit disingenuous. Today, February 28th, is Rare Disease Day, so please indulge me just a little.

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