Living with Prader-Willi syndrome
A genetic condition with weak muscles and feeding trouble in infancy, then constant hunger, learning and behavior differences, and short stature.
Understanding Prader-Willi syndrome
In infancy it causes weak muscle tone, feeding difficulties, poor growth and delayed development. From childhood, people develop extreme hunger that leads to overeating and obesity. Mild to moderate learning difficulties, behavior challenges and sleep problems are common. Puberty is delayed or incomplete, and most people are unable to have children.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weak muscle tone and feeding trouble in infancy
- Extreme hunger and weight gain
- Learning difficulties
- Temper outbursts and compulsive behaviors
- Sleep problems
- Underactive sex glands (hypogonadism) and short stature
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists, genetic specialists, hormone specialists and maternal-fetal medicine specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Foundation for Prader-Willi Research, Prader-Willi Syndrome Association and Resolve: The National Infertility Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists); Maternal-fetal medicine specialists (pregnancy-related)
- Expert care
- Expert lists: Foundation for Prader-Willi Research, Prader-Willi Syndrome Association, Resolve: The National Infertility Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Foundation for Prader-Willi Research and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in genes cause this condition but doesn't name a gene in this record.
Also known as: prader labhart willi syndrome; prader willi syndrome; prader-labhart-willi syndrome; prader-willi-labhart syndrome; pws; willi-prader syndrome
Patient organizations
- Foundation for Prader-Willi ResearchPrader-Willi syndrome · United States
- Prader-Willi Syndrome AssociationPrader-Willi syndrome · United States
- Resolve: The National Infertility AssociationInfertility · United States
- Pituitary Network AssociationPituitary deficiencies · United States
You are more than your diagnosis
Perspectives from people navigating life with Prader-Willi syndrome.
Explore research for Prader-Willi syndrome
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- Recruiting studies from ClinicalTrials.gov
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