Patient stories

 

Every patient story is different. From the day of their first seizure, to the day of diagnosis, through the months (sometimes even years) of treatment optimisation, every patient and parent will have different experiences that can be influenced heavily by you, their prescribing doctor.

 

Read James’ story

 

James is not a patient who has been treated with Epidyolex.

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James’ story

 

James is not a patient who has been treated with Epidyolex.

 

Becoming an adult with Dravet Syndrome (DS)

 

From the moment of James’ first seizure, at five and half months old, his family immediately knew that life would be challenging. A diagnosis of epilepsy was a step forward, but it wasn’t until James reached six years of age that he was diagnosed with Dravet Syndrome.

James is now classed as an adult, which I find hard because developmentally he is not an adult and probably never will be.
James’ mother

James’ family have learnt to identify seizure triggers such as getting overly excited or an increase in temperature. While James continues to make progress into adulthood, his parents are always mindful of the future and don’t want him to be left on his own.

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As a young adult, James is outgoing and enjoys school with people who understand Dravet Syndrome and focus on what makes him feel settled, safe and secure. James’ family are proud of his great character and kind and caring nature.

One of my concerns is I don’t want him left on his own or for my other children to have to support him.
James’ mother

The challenge and motivation for James’ family, teachers and loving support network, will always be to give James the best quality of life possible. New treatments options bring additional hope that his journey will continue to go from strength to strength.

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