What is it like for siblings if their brother or sister has Rett syndrome?

Siblings often say that they get on really well with their brothers and sisters who have Rett syndrome. Other siblings can find it difficult because lots of extra care and attention goes on their brothers and sisters with Rett syndrome which can make them feel left out. They can feel embarrassed if people stare at their brothers and sisters when they are out and about, because they are often in wheelchairs and behave differently. This can also make it hard to have friends round and do things that other families do.

What causes Rett syndrome?

Rett syndrome is very rare which means that very few people have it. When a person with Rett syndrome is a tiny baby they don’t show any signs of it until they are between six and eighteen months old. This is when they stop doing things that they had learned as a baby, like crawling or saying words. People are born with Rett syndrome; you cannot catch it like a cold. No one knows why some people have Rett syndrome and it is no one’s fault.

What does it mean?

People with Rett syndrome have physical disabilities. Walking and moving is harder for them and some people will use a wheelchair. People with Rett syndrome have difficulties with talking and communicating. People with Rett syndrome move their hands repeatedly. People with Rett syndrome get upset easily and might cry or scream a lot. Many people with Rett syndrome have problems with breathing and eating. Many people with Rett syndrome have epilepsy. Many people with Rett syndrome grind their teeth. Some people with Rett syndrome get scoliosis in their back. That means that their spine becomes curved. Some people with Rett syndrome have a learning disability. Some people with Rett syndrome have problems with sleeping.

What treatment is there?

There is no cure for Rett syndrome but people who have it can be helped in lots of ways. People with Rett syndrome:

• can have medicine to help improve their breathing and moving
• can have medicine to help with their epilepsy
• might wear a brace to help keep their back straight
• might wear splints on their hands to help them use their hands
• can get help with getting dressed, eating, moving and communicating

Most children with Rett syndrome go to special schools where they can get the extra help they need. When they become adults they will need a lot of help from other adults to help them have good lives.

This information has been approved by Rett UK, October 2014