Fragile X

Fragile X is carried in your genes.

You say genes like jeans.

Your genes are part of your cells.

Every living thing is made of lots of cells.

You get your genes from your parents.

Even if you do not have Fragile X, you might have the Fragile X gene.

If you have the Fragile X gene, you might pass it on to your child.

If you have Fragile X, it might affect:

• how you talk
• your feelings
• how you behave
• the way you are with other people.

Nearly all boys who have Fragile X have a learning disability .

About 1 in 3 girls who have Fragile X have a learning disability.  

Having a learning disability is different for everyone.

People with Fragile X might find it difficult to sit still or finish what they are doing.

People with Fragile X might think that some every day sounds are very loud.

Everyone with Fragile X is different.

Most people with Fragile X have a long narrow face and ears that stick out.

Doctors might not be able to tell that a child has Fragile X because it is difficult to see these things when children are young.

Lots of people with Fragile X might behave like people who have autism. For example, they might:

• not look at people's eyes
• feel anxious when they are with other people
• be very shy
• like to do things like flapping their hand, or biting their hand a lot.

A blood test will tell you if your child has Fragile X.

A blood test can also tell you if you carry the Fragile X gene.

Most people with Fragile X need help with talking and being with other people.

Some people with Fragile X have epilepsy.

A few people with Fragile X have autism.  

People with Fragile X can be happy and do things they enjoy if they have the right support.

The Fragile X Society has lots of information and support.

Genetic Alliance UK has lots of information and support.

You can also contact the Learning Disability helpline for more information and support:

• email Helpline@mencap.org.uk 
• phone 0808 808 1111