Utah Woman Faces Rare Niemann-Pick Disease, Possibly the State’s Only Diagnosed Case

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Source: KUTV
Utah Woman Faces Rare Niemann-Pick Disease, Possibly the State’s Only Diagnosed Case
Photo: KUTV
TL;DR

A 21-year-old Davis County woman may be Utah's only diagnosed Niemann-Pick disease patient, described by her family as a mix of Alzheimer’s, dementia and Parkinson’s. She travels to Chicago every two weeks for infusions, with yearly treatment costs estimated up to $3.5 million, though her insurance covers most. While there is no cure, early intervention and ongoing care aim to slow the disease, and the family remains hopeful while raising awareness.

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