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What They Don't Tell You About Having a Rare Disease

“You’re a rare bird,” they say. “A few thousand people in the world have what you have.” That’s all they tell me, the best clinic in the world.

There’s no way to stop the symptoms and ease the pain, because nobody yet has cared enough to look for a cure. “Orphan diseases,” it’s explained to me, are conditions that affect less than 200,000 people worldwide.

I have more than I can count on my fingers, but. There. Are. No. Cures. It’s what they don’t tell you about unique, chronic illness that you have to learn the hardest way.

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