NANOSNET

Hello all,

I am caring for a patient with significant Charles Bonnet Syndrome secondary to vision loss from LHON. The visual hallucinations are unusually distressing and frightening, yet no alternative etiology has been identified. We trialed low-dose quetiapine and donepezil without success and with poor tolerance; however, my inquiry is not treatment-related.

The patient is specifically interested in connecting with someone who has a clinical or research focus in CBS, and may be open to participating in clinical trials if available.

My own search has mostly led to work being done in the UK and Europe, so I was hoping for guidance from this group - does anyone know of a clinician or researcher in North America with expertise or ongoing work related to CBS?

Many thanks in advance for any recommendations.

Tatiana

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