Top 10 Myths About Prader Willi Syndrome
Prader Willi Syndrome (PWS) can be difficult to understand. It is also easy to take general information and assume that it applies to all people with PWS. From personal experience I can tell you that people with Prader-Willi Syndrome have as many beautiful variations as everyone else. I can also tell you that you can’t believe everything you read about PWS. Below are the top 10 Myths about Prader Willi Syndrome. Let me know if you have any you would like to add.
10. Your life is over when your child is diagnosed with Prader Willi Syndrome.
This is the first thought of many families diagnosed with Prader Willi Syndrome. Obviously, it isn’t true, however believing this can be difficult. You’ve just got the initial diagnosis, you’ve read a ton of PWS challenges on the internet and it feels like you will never be able to see your child succeed. Trust me … you will. You might not believe it now, but here’s the evidence that our child can:
- Learn to ski like William Compere – http://www.youtube.com/user/renaycompere#p/f/6/f1Y_2-tMV_Q and
- Learn to sing like Ryan Kendall – http://www.youtube.com/watch?v=pVvomajIU20&feature=related
- Learn to swim or dance like Lindsay Baker – http://www.youtube.com/watch?v=cM0vh6VH47E&feature=fvsr
- Run 5km like 8 year old Jenna – http://www.fpwr.ca/2010/announcements/prader-willi-syndrome-does-not-stop-8-year-old-from-running-5km/
9. People with Prader Willi Syndrome cannot go to college.
You haven’t heard of Derek Montecalvo. Derek graduated high school with a 3.25 GPA and is now studying science at the Community College of Rhode Island. Go Derek. http://www.fpwr.org/family-story/male/derek-montcalv
8. People with Prader-Willi Syndrome cannot participate in sports.
People with PWS have participated in sports from running to baseball to bowling. One of the best examples is 16 year old Meagan Mitchie who swam her way to the Special Olympics http://www.canada.com/ottawacitizen/news/city/story.html?id=6911f40a-d883-4fdf-aa4c-ace321c1e93f
7. Children with Prader-Willi Syndrome cannot participate in Halloween.
Figuring out how to participate in Halloween can be a challenge. Will my child want to eat all of the candy? Should we give out food for treats? These are good questions, but rest assured you just need to figure out what works for your family. Great solutions range from having your child dress up and hand out healthy or non-food treats to simply setting a rule that your child can only eat 2 candies and the rest goes to a children’s hospital. If you’re still not sure, you can take it up with the Hulk.
6. Height is the only benefit of Growth Hormone and it doesn’t benefit adults.
There have been a number of studies of the effects of GH on people with PWS. For a quick reference, take a look at one of the leading PWS researchers, Endocrinologist, Dr. Jennifer Miller – http://www.youtube.com/watch?v=JsVdh1bn6NU. For additional information, watch this video http://www.youtube.com/watch?v=wTayrEj5900&playnext=1&list=PLA0AC8910ECAA5E79
5. People with Prader-Willi Syndrome cannot live independently.
Although not currently common, Victoria Parker with the help of her mother have worked hard to setup an independent living arrangement. http://www.fpwr.ca/victoria-parker/
4. People with Prader-Willi Syndrome are not articulate.
You obviously haven’t heard of Jacob Yashinsky. Take a look as Jacob recites an original poem he wrote and delivered entitled, “Me Without You”.
3. It’s hard work and no fun to raise money for Prader-Willi Syndrome.
Tell that to the 10 families that ran One SMALL Step walkathons and raised over $200,000. You can take a look at what they accomplished and how the PWS Community world-wide is coming together here: http://www.youtube.com/user/fpwrcanada#p/u/1/5VJZyZBRAco
2. There is no research on Prader-Willi Syndrome.
Not even close. The Foundation for Prader-Will Research has spent over $1.6 million on PWS research, not to mention the millions spent by the NIH and PWSA(USA). Now the entire PWS community has come together and developed a Research Plan led by 65 of the top scientists in the world.
Sadly, this one is still true for now … but we’re working on it. Families from 38 cities in 7 countries are taking One SMALL Step to eliminate the challenges of Prader-Willi Syndrome. You can get involved here.
And if you are still not sure … take a look at one of the all time favourite Prader-Willi Syndrome videos … Make It Go Away