Prader-Willi Syndrome Awareness Month
They are difficult to prevent and hard to diagnose early in life. There is no cure for them. Prader-Willi syndrome is one example of such a disorder. It can affect any family member and is estimated to affect one in every 12,000-15,000 Americans each year. Prader-Willi Syndrome Awareness Month aims to educate people about the condition and help families in need.
In 1956, the first Prader Willi syndrome was diagnosed by Alexis Labhart and Heinrich Willi, Swiss doctors. They observed nine children who had similar characteristics such as small hands, weak muscles at birth, intellectual disabilities, constant hunger and small hands.
Doctors can now determine if this syndrome exists through genetic testing. They have found that the syndrome is caused in part by an abnormality on chromosome 15. This results in the dysfunctional functioning of the hypothalamus (the brain’s portion that regulates functions like hunger, emotions and body temperature).
Prader-Willi, an infant and child with Autism and ADHD, is part of a spectrum. This means that children and babies could experience varying degrees of symptoms and may be misdiagnosed. The holiday was born as a result of more research. Representatives Ed Royce, Jane Harman and the United States House of Representatives introduced the holiday in 2009.
It was made an official holiday for a month. As one of their main fundraisers, organizations such as the Foundation for Prader-Willi Research and the Prader Willi Syndrome Association sponsor the holiday. The money raised will be used to fund research that will help families manage the disorder.
You can donate to the Prader Willi Syndrome Association and Foundation for Prader Willi Research if you feel strongly about the cause. Share this holiday on social media using the hashtag #praderwillisyndromeawarenessmonth and help inform people about what this syndrome is, how common is it, and how other people can help raise awareness.