One of the challenges our family faces is helping people understand what Prader-Willi Syndrome (PWS) is and how it affects our son, Tyler. Due to a lack of information, most people do not know anything about this syndrome and look at us with glassy eyes when they hear the name. PWS is a genetic condition caused by the deletion of a portion of chromosome 15. The syndrome is characterized by cognitive impairment, difficult behaviors, and a complete lack of satiety. The lack of satiety means that Tyler is always hungry. His body does not produce the enzyme that tells his brain that he has had enough to eat, so he always feels like he is starving. At the same time, his body has extremely low metabolism. Tyler only needs about 800 calories a day to maintain a healthy weight.
In every new situation Tyler finds himself, whether it is a new school with new teachers, new bus drivers, new cafeteria workers, new janitors, or a new Bible class (basically any situation that puts him around the opportunity to be around food), we must inform everyone about Tyler’s unique needs. We need everyone’s eyes to help us as we strive to keep Tyler on track.
So, whenever we hear about opportunities to “get the word out” about this syndrome, we want to share them. Prader-Willi Syndrome was featured on Good Morning America on August 17 as a result of an article in The Washington Post on June 23, 2009 entitled, "Can't Stop Eating? For Some People, Obesity Is Not A Simple Failure of Self-Control". The show featured the Kane family, who was featured in a 20/20 story in 2004, and discussed research into hyperphagia (the uncontrolled desire to consume food). The interview is one of the best ones I have seen televised. It can be viewed at the following link: http://abcnews.go.com/GMA/story?id=8222023&page=1
For more information about Prader-Willi Syndrome go to:
Thanks to all for your constant support.
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