Wiedemann-Steiner Syndrome (WSS) is a rare condition that some people are born with. It can affect the way a person grows, learns and looks. Every person with WSS is different – some may be affected more than others.
What is it like for siblings if their brother or sister has Wiedemann-Steiner Syndrome?
Growing up with a brother or sister who has Wiedemann-Steiner Syndrome can be lots of fun, but sometimes it can feel a bit difficult too. All brothers and sisters feel like this about each other sometimes.
A brother or sister with WSS will often enjoy many of the same things, like playing games and spending time together. Sometimes, though, they might need extra help from parents or other adults to join in or to do everyday activities. Some children with WSS need more help than others. This can sometimes make siblings feel left out, but many siblings also find they enjoy helping their brother or sister and have really special, loving relationships with them.
What causes Wiedemann-Steiner Syndrome?
WSS is very rare, which means that very few people have it. It is caused by a tiny change in something we called a gene, which is like as set of instructions inside our bodies that help us grow. It happens when the baby is growing in their mummy’s tummy. You cannot catch WSS like a cold, and it is not caused by anything anyone did.
What does it mean?
WSS can affect the way a person learns, talks and moves. Some children find it harder to learn and may have muscles that are not as strong. Some are also diagnosed with autism or ADHD, which can mean they find it harder to manage their feelings and become upset or worried more easily.
Some people with WSS can also have tummy troubles, difficulty sleeping, or seizures – which is when the brain sends mixed-up signals that can make the body shake or go stiff for a short time.
People with Wiedemann-Steiner Syndrome are all different, just like everyone else. Each person is unique, and they often have more in common with their own family than with someone else who also has WSS.
What treatment is there?
There is no cure for WSS, but there are lots of ways to help. People with WSS can have physiotherapy to help with moving and muscles, speech and language therapy to help with talking, and special support at school or go to a special needs school. They will see doctors who know about WSS and will have a team of people helping them.
Although WSS is rare, your family are not alone, there are lots of people around the world with the condition – about one person in every town.
This has been read and approved for publication by Dr Wendy Jones, Consultant in Clinical Genetics and Genomic Medicine, Great Ormond Street Hospital for Children on 12.10.26 and will be reviewed and updated every 4 years.