Wednesday, May 1, 2013

May is Prader-Willi Syndrome Awareness Month!

It's May! (How did that happen?) This means that it's Prader-Willi Syndrome Awareness Month! If you're on this blog, chances are you already have some connection to PWS, but hopefully this month can be a place to learn a little more (or a lot!). Each day of the month, I'm going to share a fact about PWS, and I encourage you to pass it on!

So for starters, did you know that approximately 70% of people with PWS are walking around undiagnosed? Can you imagine?

How can this be? 

PWS is a spectrum disorder. Some people have so few symptoms or such mild symptoms that they don't know they have. Sometimes, doctors and therapists know that something is going on, but they haven't figured out what. To further complicate the issue, there are a few different kinds of genetic tests that can be run to detect PWS, but depending on the test used and the subtype of PWS (more on this later), the test could miss a PWS diagnosis.

For more information about diagnosis, click on the following link and read the first question and answer on the page: http://fpwr.org/prader-willi-syndrome-diagnosis-treatments


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