DDX3X syndrome

DDX3X syndrome happens when your DDX3X gene does not work as well as it does in other people. 

You say genes like jeans.

Your genes are part of your cells.

Every living thing is made of lots of cells.

Not many people have DDX3X syndrome.

You do not get DDX3X syndrome from your parents. 

People who have DDX3X syndrome are usually girls or women.

Nearly everyone who has DDX3X syndrome has a learning disability .

If you have DDX3X syndrome, you can have any level of learning disability.

If you have DDX3X syndrome, you might find it difficult to:

• eat or drink
• talk
• move around
• see or hear.

You might not start to do things like holding a toy or walking as quickly as other children.

You might also have seizures.

Scientists think that a lot of girls and women who have DDX3X syndrome might not have been told they have it. 

Medical staff might have made a mistake and told them they have another condition like cerebral palsy or Rett Syndrome. 

Everyone who has DDX3X syndrome is different and will need different help.

Children with DDX3X syndrome should have a doctor who has had special training to look after the health of children.  The doctor checks how the child is growing, learning, talking and behaving.  

Children with DDX3X syndrome might find might find physiotherapy and speech and language therapy helpful.

Physiotherapy can be exercises, massage or other treatment to help you to move better.

People with DDX3X syndrome can be happy and do things they enjoy if they have the right support.

The DDX3X website and the DDX3X Support UK website have lots of information and support.

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

• email [email protected] 
• phone 0808 808 1111