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. Someone with Fragile X will probably need extra help from their parents and other adults. This might cause siblings to feel left out at times, but there could be activities which you can enjoy together. Siblings might worry about how others feel about their brother or sister especially if they behave differently and find it hard to manage in some situations.

What causes Fragile X syndrome?

Fragile X syndrome is a genetic condition, so someone is born with it. It is when the brain hasn’t developed properly because one of the chemicals needed for brain development is missing. Boys are often (but not always) more affected than girls.

What does it mean?

People with Fragile X Syndrome will always have it. It is not an illness or disease, it is just part of who they are. People with Fragile X syndrome usually have a learning disability and may find parts of everyday life difficult to manage. They may also have Autism and/or ADHD. Up to one third of people with Fragile X syndrome also have epilepsy. Sometimes people with Fragile X syndrome 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, noisy or new places. When they get worried, they might find it difficult to manage their feelings and behaviour.

What treatment is there?

There is no cure for Fragile X syndrome, but doctors, nurses, teachers, therapists and social workers can help people with Fragile X to cope with things they find difficult and learn new skills. Fragile X syndrome is not a life-limiting condition. People with the condition can lead active and healthy lives into their 60s, 70s and older.

This information has been approved by The Fragile X Society, March 2024