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Navigating Medical Complexity Coping With Loss Neurojourney

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Home > Receiving The Diagnosis > Themes

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Theme: Receiving the Diagnosis

The road to diagnosis … Do we wish we had known earlier? (CLN2/Batten)

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The road to diagnosis … Do we wish we had known earlier? (CLN2/Batten)

The road to diagnosis … Do we wish we had known earlier? (CLN2/Batten)

Parents of two sons, one of whom has CLN2 (Batten disease), talk about their son’s road to diagnosis — at first they thought it was epilepsy, then autism. Going from that to a genetic diagnosis was devastating. Yes, we want early diagnosis but in some ways it was pretty nice to be clueless those first 3 years.

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