Understanding the impact of climate change on people with Dravet Syndrome

Lead researcher: Prof Sanjay Sisodiya

Start date: TBC

Our climate is changing. This will have an impact on families affected by Dravet Syndrome.

Anecdotal information from people with the condition, their families and carers, indicates that temperature influences seizures and other aspects of Dravet Syndrome. Hot weather and a raised body temperature, for example from an infection, can bring on seizures, and aggravate comorbidities, such as tiredness.

Research also shows that the protein that is faulty in most people with Dravet Syndrome, and which causes the mutation in the SCN1A gene, is sensitive to changes in temperature.

Our research plans to gather more evidence of the impact the changing climate has on people with Dravet Syndrome. Families affected by the condition will be involved in the research so we can find out how things like temperature changes and levels of carbon dioxide in the environment affect them at home.

Researchers will look at how changes in the climate affect:

• other aspects of Dravet Syndrome, including sleep, behaviour, eating, and the need for additional healthcare
• people in other countries with the condition, especially those places that are already experiencing the impact of climate change
• the mental health of people with Dravet Syndrome and their families and carers.

The research will help us provide guidance on how best to support people with Dravet Syndrome in a changing climate, and how families can adapt to reduce any negative impacts.