What is Prader-Willi Syndrome?
May is Prader-Willi Syndrome awareness month. Here are five facts you may not know about this rare and often misunderstood syndrome, which is typically characterised by feelings of constant hunger.
1. It’s genetic: About 1 in 15,000 babies will be born with Prader-Willi Syndrome (PWS). It’s caused by a missing (or not working) piece of DNA on chromosome 15. Most cases are the result of a spontaneous genetic error for unknown reasons. Prader-Willi Syndrome (PWS) affects both males and females and all ethnic groups at the same rate. A diagnosis is normally made after a blood test.
2. It’s a spectrum disorder: Not everyone diagnosed with PWS will have the same symptoms. Severity of symptoms can vary greatly. For example, someone with PWS may have cognitive issues that range from learning disabilities on one end of the scale, to a moderate intellectual disability at the other end.
3. Food and hunger are constant features: Someone with PWS may feel constantly hungry. No matter how much or often they eat, their brain doesn’t tell them when they’re full. Imagine the emotional state you find yourself in when you’re ‘hangry’. This feeling is what people with PWS battle with every minute of every day.
4. Treatment: There is no cure for PWS, but Human Growth Hormone (HGH) therapy is becoming a standard treatment. Hormone treatment can be used to promote growth, improve muscle tone and decrease body fat. It has also been found to help improve strength, agility and endurance. Studies have shown that the earlier hormone therapy begins the more beneficial it can be for people with PWS.
5. High pain threshold: A person with PWS may have a high pain threshold. This sometimes means that infections or illnesses don’t always get picked up or receive medical treatment until later stages. Vomiting is also generally rare in people with PWS.
For more information go to the Foundation for Prader-Willi Research: fpwr.org
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