Rett syndrome Easy Read

Rett syndrome is a rare condition that affects the brain. 

There is no cure for Rett syndrome.

It is mostly women who get Rett syndrome.

People with Rett syndrome might live to be adults,

but some die younger because of symptoms like heart problems or epilepsy.

There are many symptoms for Rett syndrome, they start to show at 6 to 18 months old.

• Repeated and hard to control hand movements like tapping.

• Scoliosis, which is where the person’s spine becomes curved.

• They might not be able to walk

• They may have problems breathing properly.

• They may have seizures

• They may become upset or scream for no reason.

Every person’s body has something called genes.

Everyone has nearly 20,000 genes in their body.

People have Rett syndrome when they are born with one of these genes not working.

This can happen for no reason when a baby is growing.

Caring for someone with Rett syndrome is hard, but you can get help.

• Medicine might help with some symptoms like seizures.

• Speech and language therapy might help them with talking

• Learning other ways to communicate like Makaton might help someone with Rett syndrome.

• You can talk to a doctor for help with Rett syndrome.

• Rett UK give support and advice about managing Rett syndrome.

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

  Email: [email protected]

  Phone: 0808 808 1111