[Not ME] When the hoofbeats really are a zebra’s, a patient community helps me navigate a new rare-disease reality

Andy · Mar 4, 2020

I was a doctor before I became a mother and I felt entirely unprepared for this reality. I struggled to grasp what this condition would mean for my daughter’s life. I knew nothing about what it would be like to care for a baby with a chronic illness.

Over the course of the two weeks we spent in the hospital, we shared a hospital room with four other pediatric patients. Day in and day out, I felt traumatized by each mother I could hear weeping for her child. Was this what I was in for?

The medical databases I relied on could not answer that question. That’s when I stumbled upon the Congenital Hyperinsulinism International Family Support Forum, a private community on Facebook dedicated to navigating life with this disease.

What is rare in the medical community is the group’s daily reality. Among us, zebras, or a “CHIbras,” as children with congenital hyperinsulinism are affectionately called, are common. The forum is a treasure trove of lived experience. From navigating side effects of medication to confronting issues at day care, this community has undoubtedly strengthened my ability to care for my baby.
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https://www.statnews.com/2020/03/02/patient-community-helps-navigate-new-rare-disease-reality/

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[Not ME] When the hoofbeats really are a zebra’s, a patient community helps me navigate a new rare-disease reality

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[Not ME] When the hoofbeats really are a zebra’s, a patient community helps me navigate a new rare-disease reality

Andy Committee Member

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