In honor of Rare Disease Day tomorrow, I took to my column to write about a story that always warms my heart.
It’s about a doctor I met the day I received spinraza for the first time. We instantly hit it off, and it wasn’t before long that he started calling me his spotted zebra— with good reason, of course. From the get-go, he recognized just how rare my rare disease is.
But instead of shying away from my many complexities, as some doctors have done, he embraced it and recognized that when it comes to my health, we have to get a little creative. Hence the reason for the mythical nickname.
I’ll let you read the column here. But, I’m curious… do you have doctors who truly understand you as a person with a rare disease and not just some problem to solve? Or have you experienced the complete opposite where doctors show no regard to your needs and have zero bedside manner?
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