Dravet syndrome

Severe myoclonic epilepsy of infancy, SMEI

What is Dravet syndrome?

Dravet syndrome is a life-long and rare neurological condition. It is a type of childhood epilepsy that usually begins in the first year of life. 1 in every 15,000 babies in the UK are affected by Dravet syndrome.

What causes Dravet syndrome?

Around 85 out of 100 people with Dravet syndrome are found to have a spontaneous genetic mutation. This means that the mutation is new in the child and not inherited from either parent.

The full cause of Dravet syndrome is not completely understood. But research is ongoing in this area to better understand the factors involved.

What are the symptoms of Dravet syndrome?

The main symptoms of Dravet syndrome include seizures and learning disabilities.

Each individual with Dravet syndrome shares the same key characteristics. However, the range and severity of symptoms may vary.

There are a number of other issues that may affect people living with Dravet syndrome.

The most common include:
● Communication and language problems
● Autism
● Attention deficit hyperactivity disorder ADHD
● Difficulty with mobility
● Difficulty with sleep

Are you affected by Dravet syndrome?

If you’re affected by Dravet syndrome, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with Dravet syndrome, emotional support such as counselling and group therapy and social activities to people with Dravet syndrome from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone affected by Dravet syndrome

We support carers, friends and family too.

Are you a carer for or relative of someone with Dravet Syndrome? It’s just as important for you to look after your own physical and mental wellbeing, too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including Dravet Syndrome, from anywhere in the UK.

We also run an additional carer advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

Support groups

Support groups at The Brain Charity

Are you interested in setting up a Dravet Syndrome support group, or do you already run one?

Email info@thebraincharity.org.uk to let us know.

We’d also love to see you at our monthly coffee morning—a great chance to connect with other parents and share experiences.

Other charities

Dravet Syndrome UK

Website – www.dravet.org.uk

Helpline – 01246 912 421

Email – info@dravet.org.uk

Young Epilepsy UK