Prader-Willi Syndrome

Disorder Makes Hunger a Constant Companion

About one in 12,000 to 15,000 children is born with a complex genetic mistake known as Prader-Willi syndrome that discombobulates the hypothalamus, a section of the brain responsible for a wide variety of functions, including appetite control.

Prader-Willi Syndrome: My experience as a carer, a geneticist and a medical student

It dawned on me that this was a rare disease that many doctors will never come across. Years later as a medical student, it would be described by other students as “the one where you can’t stop eating and get really fat”.

‘Food Is a Death Sentence to These Kids’

Though people with the syndrome now routinely live into their 50s and 60s, their average life expectancy in the United States is 30; most die of obesity-related causes. Frighteningly, because no sensation of satiety tells them to stop eating or alerts their body to throw up, they can accidentally consume enough in a single binge to fatally rupture their stomach.

A Rare Eating Disorder Causes Binge Eating and Food Theft

Prader-Willi Syndrome is a rare genetic condition characterized by a perpetual feeling of hunger that can lead to theft and binge eating to the point of bursting the lining of the stomach.

Prader-Willi and not feasting at Christmas

Our daughter Josie is 16 and has a rare medical condition called Prader-Willi Syndrome (PWS) which comes with learning difficulties and sometimes health complications. Children with PWS have an insatiable appetite and never physically feel full. Some young people and adults will raid the fridge, go through bins or eat frozen food if they can get their hands on it.

Robert’s Life with Prader-Willi Syndrome: A Rare Disease Story

Soon after settling in, the joy of welcoming our new child into the world became overshadowed by worry, as my husband Carey and I found ourselves searching for reasons to explain Robert’s inability to breastfeed and low muscle tone.

The Global PWS Registry: Empowering Families, Advancing Research

The Global PWS Registry is a powerful tool for the PWS community to advance understanding of PWS, areas of unmet need, standards of care, and new therapies. Data from the registry is shared back to the PWS community, and is also used by researchers and scientists. By participating, families of those with PWS become part of the research team, helping uncover trends in causes and diagnosis as well as new directions in therapies and treatment.

Time-restricted eating can overcome the bad effects of faulty genes and unhealthy diet

Timing our meals can fend off diseases caused by bad genes or bad diet. Everything in our body is programmed to run on a 24-hour or circadian time table that repeats every day.

Zafgen Opens A New Front In Its Obesity Strategy: Prader-Willi Syndrome

This drug and other emerging approaches in play at Zafgen offer real promise to address the medical needs of one of the biggest healthcare challenges we face today. It’s exciting to be a part of the story.

Bringing Hope: A Mother's Perspective

When we received our daughter’s diagnosis one month after her birth, our world turned upside down. Our perfect little family was suddenly thrown into a new world where doctor appointments and therapies ruled. This world was more unknown than known.

The Lodger and Us

Our life with our son The Lodger, who just happens to have Prader-Willi Syndrome

Foundation For Prader-Willi Canada

Our mission is to eliminate the challenges of Prader-Willi Syndrome through the advancement of research.

Foundation for Prader-Willi Research

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

International Prader-Willi Syndrome Organisation

IPWSO has been working since 1991 to guide and support caregivers, professionals and families where there is a child or adult with Prader-Willi syndrome.

Prader-Willi California Foundation

PWCF provides support, education, and advocacy services for persons living in California with Prader-Willi Syndrome.

Prader-Willi Syndrome Association

We are here to help! We are committed to ensuring that newly diagnosed families have the most up to date research material, educational literature, counseling, nutrition, and medical information all within our Package of Hope

Genetics Home Reference

Some people with Prader-Willi syndrome, particularly those with obesity, also develop type 2 diabetes (the most common form of diabetes).

Nature

Prader-Willi syndrome is characterized by severe infantile hypotonia with poor suck and failure to thrive; hypogonadism causing genital hypoplasia and pubertal insufficiency; characteristic facial features; early-childhood onset obesity and hyperphagia; developmental delay/mild intellectual disability; short stature; and a distinctive behavioral phenotype.

NORD

Prader-Willi syndrome (PWS) is a genetic multisystem disorder characterized during infancy by lethargy, diminished muscle tone (hypotonia), a week suck and feeding difficulties with poor weight gain and growth and other hormone deficiency. In childhood, features of this disorder include short stature, small genitals and an excessive appetite. Affected individuals do not feel satisfied after completing a meal (satiety). Without intervention, overeating can lead to onset of life-threatening obesity.