What causes Bardet-Biedl Syndrome?

BBS is very rare which means that very few children have it. People are born with BBS.  You cannot catch it like a cold or get it from an accident like a bang on the head. It is passed on through a gene by both parents.

What does this mean?

People who have Bardet-Biedl Syndrome may have extra fingers and toes which are usually removed when they are a baby. They may have problems with their sight which may get worse over time and may have problems with their kidneys. People with BBS may have a learning disability which affects their ability to understand or use spoken and written words. They may struggle to communicate and may get upset or cross easily.

What treatment is there?

People with BBS will have their eyes checked regularly and may see special doctors who know about Bardet-Biedl syndrome.  A dietitian may help them to learn about healthy foods; an occupational therapist may help them with learning to play and how to look after themselves. They may have speech and language therapy to help them with their talking and understanding. They may have extra help with their learning and may go to a school that can provide extra help and support.

What is it like for siblings if their brother or sister has Bardet-Biedl Syndrome?

Lots of siblings have good relationships with their brothers and sisters who have BBS. Other siblings can find it difficult because their brothers or sisters need lots of extra care and attention which can make them feel left out. They can feel embarrassed if people stare at their brothers and sisters when they are out and about. This is because people with BBS may look and behave differently to other children. This can also make it hard to have friends round and do things that other families do.

This information has been read and approved by the Bardet-Biedl Syndrome UK December 2023