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How My Daughter Made Me Into an H-ABC Leukodystrophy Expert

When we first heard of H-ABC leukodystrophy, there was very little data available. In fact, although the condition had been under investigation in Europe, it wasn’t until 2014 that the gene causing the defect was identified in the U.S.

However, Elouise had symptoms that were progressing for many years before we finally received the diagnosis (which happened when she was 8 years old).

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