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When the hoofbeats really are a zebra’s, a patient community helps me navigate a new rare-disease reality



“I have some unexpected news.” That’s what the doctor said to me when my 10-month-old baby was tested for the cause of her persistently low blood sugar. Unexpected is how I’ve come to understand our new normal living with a rare disease. Braving this challenge alongside my child has opened my eyes to the importance of patient communities. 

While hospitalized for pneumonia a few months ago, my daughter’s doctors detected some unusually low blood sugar that needed to be investigated.

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