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

Lots of siblings have really good relationships with their brothers and sisters who have Fragile X syndrome. However, siblings can feel worried in case their brothers and sisters get bullied because they look and behave differently. Siblings may also get embarrassed because their brothers and sisters find it hard to behave well in busy or noisy places.

What causes Fragile X syndrome?

Fragile X syndrome is something that somebody is born with. It is passed from parents to their children. It is when the brain hasn’t developed properly because one of the chemicals needed to make it develop is missing. Boys are usually more badly affected than girls.

What does it mean?

Some people with Fragile X syndrome don’t have any signs of it. Other people with Fragile X syndrome may have a learning disability and can be very active. They may have ADHD. Sometimes they can get very worried if their normal routine is changed or when they have to move from one place to another place. Sometimes they get worried when they are in busy or noisy places. When they get worried, they might find it difficult to behave well. Their face may be quite long and they may have very bendy arms and legs. About a third of people with Fragile X syndrome also have epilepsy.

What treatment is there?

There is no cure for Fragile X syndrome but people who have it should have lots of help from doctors, nurses, teachers and social workers to help them cope with things they find difficult and learn new skills.

This information has been approved by The Fragile X Society, October 2013