Conditions & syndromes · England
Prader–Willi syndrome
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Prader–Willi syndrome is often called PWS.
Each person needs their own support.
Your own needs
PWS can affect your body, hunger and learning.
You have your own strengths, interests and goals.
Babies with PWS may need help feeding.
Later, many people feel hungry even after eating.
This is part of the condition.
Food support and choices
A dietitian helps plan food and nutrition.
Your plan should fit your health needs.
Do not copy another person’s diet.
Knowing when food is coming can help.
People supporting you should follow the agreed plan.
They should explain changes and listen to you.
Your rights still matter.
Restrictions need a clear reason and regular review.
Ask for help if you disagree with your support.
Health checks and warning signs
You may need checks for sleep, hormones, teeth and other health needs.
Ask who will arrange these checks.
Pain or illness may not show in the usual way.
Tell your health team about changes from your usual health.
People should take your concerns seriously.
A swollen or painful tummy can be serious with PWS.
Being sick or unusually tired can also be warning signs.
Get urgent medical help and tell staff about PWS.
Call 999 for collapse, serious breathing problems or sudden severe tummy pain.
Do not wait for severe pain before getting help with other warning signs.
Everyday support
Ask for help if swallowing is difficult.
People supporting you should know what to do if you choke.
Tell someone if you have trouble doing a poo.
Ask for a bowel support plan if you need one.
Your plan should include things you enjoy.
Friends, learning and activities matter too.
A health passport tells staff what helps you.
PWSA UK has a medical alert card and useful information.
Share your plan with people supporting you.
What you can do next
Ask for a clear food and health plan.
Ask what to do if you become unwell.
Read PWSA UK health information Web pageThis link opens another website.
It may use harder words.
More useful links
- PWSA UK: health and medical alert resources Web page
Specialist clinic information, hospital resources and a downloadable medical alert card.
- PWSA UK: care guidance Web page
Topics to discuss with the clinical team throughout childhood and adulthood.
- NHS: Prader–Willi syndrome Web page
Overview, diagnosis and links to symptoms and management.
- NHS: Mental Capacity Act Web pageFuller information
Supporting decisions and applying the legal safeguards.
These links open other websites.
They may use harder words.
Prader–Willi syndrome: food, health and everyday support
Understanding Prader–Willi syndrome, specialist food support, medical warning signs and a full everyday life.
Children and adults · England · Individual specialist advice matters
What is Prader–Willi syndrome?
Prader–Willi syndrome (PWS) is a rare genetic condition involving chromosome 15. It can affect the body’s regulation of hunger and hormones, muscle tone, development and learning. Genetic testing can confirm the diagnosis. People have different strengths and support needs; the condition does not tell you everything about a person or determine their goals.
Needs can change with age
Babies often have low muscle tone and difficulty sucking or feeding. Some need tube feeding and specialist support. Later, many people develop persistent hunger and difficulty feeling satisfied after meals, called hyperphagia. This has a biological basis. Do not treat it as greed, poor parenting or a failure of willpower. The timing and pattern vary.
Make a specialist nutrition plan
Ask the medical team for an experienced dietitian. Plan nutrition, portions, growth or weight monitoring, activity and any supplements for the individual. Energy requirements may be lower, but adequate nutrients remain essential. Do not copy another person’s diet or start supplements or weight-loss medicines without advice. Feeding and swallowing difficulties may need speech and language therapy.
Make food arrangements predictable
A consistent food-managed environment can reduce uncertainty and serious overeating risks. Agree when food will be available and how supporters will follow the plan at home, school, work, respite and outings. Explain arrangements accessibly and include choices within the plan. Avoid food rewards, threats, shame or sudden changes. Ask for specialist help when food-related anxiety or distress increases.
Restrictions need an individual lawful basis
Food safety does not remove a person’s rights. For people aged 16 or over, support decision-making and assess capacity for the particular decision when necessary; diagnosis alone does not prove incapacity. Where capacity is lacking, use the Mental Capacity Act’s best-interests and least-restrictive requirements. Any restrictions need justification and review. Seek specialist advice about serious disagreement or possible deprivation of liberty.
Check the whole person’s health
Ask about a coordinated plan covering sleep and breathing, hormones, growth, puberty, bone health, spinal curvature, teeth, skin and emotional wellbeing. Physiotherapy and suitable enjoyable activity may help strength and movement. Growth hormone and other hormone treatment require specialist assessment and monitoring. Plan the move from children’s to adult services early so reviews and prescriptions do not lapse.
Understand unusual signs of illness
Some people with PWS experience or show pain differently and vomit less readily. A serious illness may therefore look less dramatic than expected. Notice changes in energy, eating, movement, breathing, usual behaviour or responsiveness. Tell clinicians what is different and that the person has PWS. Do not dismiss a new symptom as behaviour or wait for a high pain score.
Abdominal symptoms can be an emergency
Acute stomach enlargement and rupture can be life-threatening, including after overeating. New abdominal swelling or pain, vomiting or marked lethargy needs urgent medical assessment; explain the PWS-specific risk. Suspected acute stomach distension needs emergency hospital care. Call 999 for collapse, severe breathing difficulty or sudden severe abdominal pain. Absence of vomiting or severe pain does not rule out danger.
Choking, breathing and constipation
Choking risk can increase with rapid eating and swallowing difficulties. Ask for an individual eating and drinking assessment and ensure supporters know appropriate choking first aid. Pauses in breathing during sleep or unusual daytime sleepiness need medical review. Constipation also needs an individual bowel plan and monitoring where indicated. New symptoms should not simply be treated with extra laxatives without considering urgent causes.
Plan a good life and consistent support
Build the plan around interests, communication, relationships and meaningful daily activities. Prepare for changes and offer time to process information. Explore pain, anxiety, sensory overload and unmet needs when someone is distressed. Education, employment and community support should be tailored to the person. PWS and pica are different conditions: repeated eating of non-food items needs its own assessment.
Know who can help
Ask the GP or specialist team about PWS-experienced services and who coordinates care. PWSA UK offers information, family support and details of specialist clinics. Keep a current health or hospital passport and the PWS medical alert card available, including medicines, communication needs and emergency instructions. Share the agreed plan with new supporters and review it when health or circumstances change.
Words you could use
“Please agree a PWS-specific health and food plan with me, explain emergency signs, and record how my choices and rights will be supported.”
More useful links
- PWSA UK: health and medical alert resources Web page
Specialist clinic information, hospital resources and a downloadable medical alert card.
- PWSA UK: care guidance Web page
Topics to discuss with the clinical team throughout childhood and adulthood.
- NHS: Prader–Willi syndrome Web page
Overview, diagnosis and links to symptoms and management.
- NHS: Mental Capacity Act Web pageFuller information
Supporting decisions and applying the legal safeguards.
These links open other websites.
They may use harder words.
Where the information comes from
Links checked 1 November 2026.
These links open other websites.
They may use harder words.
- NHS: Prader–Willi syndrome overview Web page
Genetic condition, diagnosis, varied needs and specialist support.
- NHS: PWS symptoms Web page
Changing feeding needs, sleep, pain, muscles and other health issues.
- NHS: PWS management Web page
Dietetic, developmental and specialist treatment support.
- PWSA UK: management guidance Web page
Food management, endocrine care, acute stomach risks, choking and constipation.
- PWSA UK: health resources Web page
Specialist clinics, medical alert cards and hospital information.
- PWSA UK: mental capacity hub Web page
PWS-specific decision-making difficulties and the need for lawful, individual assessment.
- NHS: Mental Capacity Act Web pageFuller information
Capacity is decision-specific; best interests and least restriction apply where capacity is lacking.
- NHS: stomach ache Web page
Emergency signs including sudden severe pain, collapse-related concerns and breathing difficulty.
- NICE NG11: recommendations Web pageProfessional guidance
Person-centred support, understanding distress and improving quality of life.