What is Prader-Willi syndrome?
Prader-Willi syndrome is a rare genetic condition with a wide range of symptoms that can affect appetite, development, and behaviour.
What causes Prader-Willi syndrome?
Genes are instructions that tell our bodies how to grow and work. These genes are organised into structures called chromosomes, which are found in every cell in the body.
Prader-Willi syndrome is caused by a problem with genes on chromosome 15, when some of these genes are missing or not working properly. This affects how the brain and body develop before birth.
This usually happens by chance before birth and is not caused by anything the parents did or did not do.
Who does Prader-Willi syndrome affect?
Prader-Willi syndrome affects males and females equally.
It is rare, affecting around 1 in 15,000 people.
One of our Mythbusters, Harvey Price, has Prader-Willi syndrome. Watch our video to find out about Harvey.
How does Prader-Willi syndrome affect people?
Prader-Willi syndrome often follows a development pattern that makes it different from many other genetic conditions.
Early life
Babies with Prader-Willi syndrome often:
- Feel very floppy (low muscle tone)
- Have difficulty feeding
- Gain weight slowly
- Reach developmental milestones later than expected.
Many babies with Prader-Willi syndrome will need extra support with feeding.
Late childhood and beyond
As children with Prader-Willi syndrome grow, many will develop a constant feeling of hunger because their brains do not regulate appetite in the usual way. This can lead to:
- Strong food-seeking behaviour
- Difficulty feeling full
- Risk of overeating and weight gain.
This change from poor feeding in infancy to an increased appetite later in development is one of the key features of Prader-Willi syndrome. There isn’t a medicine that can shut the hunger off or fully control it. Instead it must be managed with support, routine, and carefully controlled access to food in order to keep the person safe and healthy. It is important to remember the hunger issues caused by Prader-Willi are nobody's fault and not anything to feel guilty about. Some people may struggle more with some symptoms than others, this is because everyone with Prader-Willi syndrome is different and will need their own level of help.
Other common features
People with Prader-Willi syndrome may also have:
- A learning disability A learning disability is to do with the way someone's brain works. It makes it harder for someone to learn, understand or do things. (usually mild to moderate)
- Speech and language issues
- Behavioural differences, such as anxiety or emotional outbursts
- Short height
- Hormone differences affecting growth and puberty
- Sleep problems.
Not everyone will have all of these features, and not to the same degree.
Help and support for living with Prader-Willi syndrome
People with Prader-Willi syndrome will likely need some level of support system in place throughout their lives. This might include:
- Structured routines around food and eating
- Regular health checks
- Speech and language therapy
- Physiotherapy
- Support in education Education is when you learn things. When you fill in a form to get a job, education means you write where you went to school, college or university.
- Behavioural support.
- Reminders that having Prader-Willi syndrome is not their fault
There is no cure for Prader-Willi syndrome, as the effects of the genetic change take place during a baby's development. However, with proper support and management people with Prader-Willi syndrome can experience Experience is when you have learned or tried something before. full and rich lives.
It’s important for children with Prader-Willi syndrome to be supported by a paediatrician and a wider team of professionals. By engaging in ongoing conversations with medical professionals, a health plan can be put in place. This might include a combination of physical, behavioural, and speech therapies.
For more advice and information about Prader-Willi syndrome, you can visit Prader-Willi Syndrome Association UK.
For general advice for living with a learning disability, you can contact the Learning Disability Helpline to chat to one of our friendly and informed advisors.
Questions and answers about Prader-Willi syndrome
Prader-Willi syndrome is a lifelong condition. Some areas of difficulty such as movement and communication can improve significantly with support. However appetite differences usually continue and need ongoing support.
Most cases of Prader-Willi syndrome happen randomly and are not inherited. However Prader-Willi syndrome can sometimes be passed on from parent to child. If you are concerned about potentially passing on Prader-Willi syndrome you should contact a genetic specialist for advice.
You could say it is a rare genetic condition that affects hunger, growth, and learning.
This depends entirely on the person. Some people can live mostly independently, with support check-ins. Others may need more regular help, especially with managing food and routines.
Start by speaking to your GP or health visitor. They can refer you to a specialist.
Diagnosis
A diagnosis is when a medical professional like a doctor has said you have a certain illness or condition.
is confirmed with a genetic blood test.
Sources:
- NHS The NHS is the National Health Service. The NHS gives free healthcare to everyone in the UK and includes things like your GP (doctors) surgery and hospitals. : Prader-Willi syndrome
- MedlinePlus: Prader-Willi syndrome
- Prader-Willi Syndrome Association UK.
Care. Community. Campaign
Support to live life to the full.
This is learning disability.
More conditions linked with Learning Disability
Get help and advice online with Mencap
Whether you're a parent, healthcare professional, or someone with a learning disability, we've created a tool that offers clear explanations, helpful resources, and easy read Easy Read is a way of making written information easier to understand. Pictures are usually added next to the writing. resources to guide you towards the information you need.
