What is it like for siblings if their brother or sister has Dravet Syndrome?

Siblings often enjoy spending time with their brothers and sisters with Dravet Syndrome and have very good relationships with them. However, some siblings can find it frightening when their brothers or sisters have seizures. It can be scary when an ambulance arrives at their house and they have to go into hospital. Siblings worry about them when they have to go into hospital and might feel frightened about visiting them. Siblings can also feel left out because their brothers and sisters need lots of extra attention from a parent to help them with every day life.

What causes Dravet Syndrome?

People are born with Dravet Syndrome. You cannot catch it like a cold or get it when you are older. People with Dravet Syndrome have something different in their genes and this affects the way their brain works. 

What does it mean?

People with Dravet Syndrome start to have seizures before they are one year old. These often happen when they have a temperature. Sometimes the seizures go on for a long time and they need to go into hospital. When children are about two years old they start to have other types of seizures.

Children with Dravet Syndrome might take longer to learn to do things like other children. They might take a long time to learn to speak or they might not speak at all. They may find it difficult to control their bodies or have ADHD. They may have behaviour like someone with autism or have difficulty sleeping. They may also get infections more easily than other people or be sensitive to things like different temperatures and lights.

What treatment is there?

• Dravet Syndrome cannot be cured.  Children with Dravet Syndrome usually take medicine to try to help them have fewer seizures
• Some people with Dravet Syndrome may find eating difficult, might be on a special diet or may need to be fed through a tube
• Children with Dravet Syndrome will usually need help from their parents or carers throughout their lives and may need help with things such as talking, sleeping, eating and walking. They may need special equipment such as a seizure monitor, wheelchair or oxygen at home

Information approved by Dravet Syndrome UK March 2024