Prader-Willi Syndrome

Someone I Love Has Prader-WHAT?

How often does this happen to you? Someone mentions something to you that you’ve never heard of and then all of a sudden someone else mentions that something again and then out of the blue you hear it once again. That uncommon something is more prevalent than you ever would have known. Well, that’s how it is and was for me about Prader-Willi Syndrome.

A Book Of BulliesI was made aware of the syndrome through a wonderful book, Book of Bullies written by Katherine Stanley. Katherine has Prader-Willi Syndrome.

Katherine believes that she has been able to achieve all she has because her family has always given her the benefit of the doubt and has encouraged her to have goals and believe in herself. Katherine has speaking engagements and does book signings. She is a great example of how love and support can influence one’s life.

The Prader-Willi Syndrome Association’s national headquarters is Sarasota, Florida. To learn more visit: www.pwsausa.org.

Prader-Willi Syndrome is a rare, non-hereditary genetic disorder that affects children of both sexes and all races. It occurs in 1 out of 12,000 births and affects hundreds of children and adults in Florida alone.  Children born with this disorder have an insatiable hunger and appetites that can lead to morbid obesity and other complications if not strictly supervised. To add insult to injury they have a slower metabolism require making their challenge with food even more difficult. These children have cognitive impairment, difficult behaviors, weak muscle tone and other difficulties. Physical, speech and occupational therapies help in their development as well as several very expensive medications, which include growth hormone shots to give them height, muscle mass, energy and help control life threatening obesity. Early intervention and continued research are key to providing these children with a chance to be the very best they can be and to have a chance for a happy and healthy lifestyle.

Prader-Willi Syndrome is a rare, non-hereditary genetic disorder that occurs in They require years of physical, speech and occupational therapies as well as several very expensive medications, which include growth hormone shots to give them height, muscle mass, energy and help control life threatening obesity. Early intervention and continued research are key to providing these children with a chance to be the very best they can be and to have a chance for a happy and healthy lifestyle.

Funds raised from these events will be used to support research projects and to provide education and resources to improve the quality of life for everyone with the syndrome.

Katherine and Laura Stanley

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2014-06-06