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PCDH19 Epilepsy: Motherhood and the journey towards finding hope and healing

Updated: Jan 15, 2022

Hannah Deacon recently featured on an episode of the Rarely Heard podcast; talking all things medical cannabis.

Rarely Heard is a rare disease podcast series that exists to share the stories, experiences, knowledge, insights and voices of those living with some of the world's rarest diseases. These stories should not be Rarely Heard, but widely shared.


Hannah’s son Alfie was the first person to receive an NHS prescription for medical cannabis. He lives with an incredibly rare form of epilepsy, PCDH19, which saw him turn from a seemingly healthy baby to living his life in and out of hospitals in just a few months; suffering life threatening clusters of seizures. PCDH19 Epilepsy is characterised by treatment-resistant epilepsy that begins in the first year of life with early onset seizures.

As well as being a parent carer, Hannah became both a campaigner and an active advocate, and has gone on to win awards for her hard fought medical cannabis campaign. She continues to campaign for fair access to medical cannabis treatments on the NHS for everyone.

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