Prader-Willi Syndrome
PWS is a complex and challenging disorder, but that does not mean that there is no hope. Treatments such as growth hormone therapy have already radically changed the face of PWS - Foundation for Prader-Willi Research
image by: The Foundation for Prader-Willi Research
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‘Food Is a Death Sentence to These Kids’
In 1981, researchers at the Baylor College of Medicine made a significant discovery: Errors on the chromosome 15 segment — which occur at conception and for which there are no clear risk factors, except in a fraction of cases — produce the syndrome, making it one of few known genetic causes of obesity. No other genetic disorder incites the same extreme lack of satiety or urge to obtain food. Researchers now know that the damaged stretch of chromosome affects at least a dozen genes, but which of those genes govern hunger and fullness — and how — is still a mystery. What is certain is that Prader-Willi disrupts the functioning of the hypothalamus, a region of the brain that is involved in appetite…
Resources
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. Dr. David Ledbetter and his colleagues found that many people with the syndrome were missing the same segment of genes from Chromosome 15, a deletion that is now known to account for about 70 percent of cases. The missing genes are from a chromosome contributed by the child's father. (Another genetic disorder, Angelman syndrome, involves the same missing piece of Chromosome 15 contributed by the child's mother.)
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.
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.
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
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.
MedlinePlus
Prader-Willi syndrome is a complex genetic condition that affects many parts of the body. In infancy, this condition is characterized by weak muscle tone (hypotonia), feeding difficulties, poor growth, and delayed development. Beginning in childhood, affected individuals develop an extreme hunger, which leads to chronic overeating (hyperphagia) and obesity. Some people with Prader-Willi syndrome, particularly those with obesity, also develop type 2 diabetes (the most common form of diabetes).
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