Top 10 Myths About Prader Willi Syndrome
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.
Still not sure, watch the research videos at http://www.fpwr.ca/media-gallery/videos/ or go to Prader-Willi Syndrome Research.
1. People with Prader-Willi Syndrome are always hungry and there is no cure.
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
Renea Johnson Says:
Thank you for publishing this. There are so many positive things about our children, you just have to stop and see them.
Posted on February 20th, 2011 at 10:32 am
Cecilia Kresch Says:
#11 – People with PWS cannot help cook.
My Daniel (21) loves to cook. He is the go to person in the family for birthday cakes, which he can make from start to finish with no assistance. Other than licking the beater (with permission – two licks) , he won’t touch a drop of batter or frosting.
Posted on February 22nd, 2011 at 8:02 pm
Renay Compere Says:
Oh my gosh you guys. So inspiring!!! Thank for sharing this with us. Soooo awesome!!!
Posted on February 23rd, 2011 at 1:19 am
Pam Tidwell Says:
Great job! We sure do need to be positve and get the word out that everything is not just doom and gloom. Thanks for the inspiration and effort to put this together.
Posted on February 23rd, 2011 at 10:46 am
Helen Grabienski Says:
Wittekindshof has worked with PWS for years. Various Homes were built and concepted for the special needs necessary to make the life of people with PWS easier.
I have worked there for nearly two years now. In Herne we have 12 people living together, each with there own rooms but also with communial rooms. Either ist used of their own acords apart from the daily routines that are necessary. The communial rooms are used for having fun together and also for meals.
Posted on March 5th, 2011 at 1:55 am
tamara Says:
thanks for this Keegan. Your point of view and sharing positive stories is what changes negative attitudes, and alleviates the fears parents have about the syndrome! Our daughter Michelle (22 years old- almost) is the greatest blessing in our lives–without a doubt! Our family has had huge challenges through the years with Michelle, but the rewards we have gained are inmeasurable.
Michelle now lives in an independent suite with her 2 dogs. She is now at an absolutely IDEAL weight because her food is controlled. She went to postsecondary for 3 years, and has a paid job- 12 hours a week. She has 2 volunteer jobs -20 hours a week and she exercises 6 times a week. She is very happy.
Posted on March 21st, 2011 at 12:32 pm
Georgina Says:
i have prada willi syndrome i thought the halloween party answer isnt very good letting them have two candys and sending the rest to the hospital what i would do if it was my sweets is i would have two sweets and keep the rest of the sweets and have two each day i think that is a better way it is silly really if the rest went to a hospital because it isnt fair on that person you are not setting a good example they can have all of them but have them a couple a day.
Posted on May 30th, 2011 at 7:11 am
bob Says:
LOL PB TV LB
Posted on February 3rd, 2012 at 3:08 pm
Jude Says:
Thank you for this page. I’m a health & social care degree student with the Open University in the UK. I saw a documentary a while ago about Prada-Willi Syndrome & wanted to find out more. It’s really helpful to find out the myths before I go into the other stuff on the internet, so I’m aware of the potential false info. I agree with Georgina about the two candies a day thing. Why should a kid with Prada Willi Syndrome have to give most of their candies away when they know full well other kids don’t, that would be unfair. It would also provide an opportunity to teach the child that it’s OK to have sweets (as we call them here in the UK) in moderation & that it’s when they eat lots all in one go that it’s a problem. I may not be an expert in Prada-Willi Syndrome, but I have loads of experience with kids & I’m always looking for opportunities like that to teach kids things that will provide them with an easy to understand way of teaching them something. And that kid who makes the cakes, good on him. To do that without spoiling it by eating it must be really difficult for him. I guess he must have learnt that seeing he’s done something that’s made people happy gives him a buzz that out-weighs giving in to the strong pull of Prada-Willi Syndrome. And he seems to have developed a skill he could potentially use for work when he’s later if he wants to. Good on him.
Posted on February 8th, 2012 at 1:55 am
Jeanie Eddington Says:
I have a daughter that has PWS. She is 15 years old and her name is Samantha. She is a great joy to have! We have known of her condition since she was a week old. When we first heard of PW and the affects it could have on “Sam”, it was overwhelming. We looked to find information on her condition, but most of what we could find was negative . Being a Christian we gave it all to Christ. Our trust, faith, our all. He has blessed us so!Samantha loves life. She has a wonderful since of humor. She loves to help cook and other house old things. She loves fruits and veggies. She loves people and animals. She loves to play cooking,school, and with her baby dolls. She is a great mother. It is an experience I would do over and over again. God has blessed us so.
Posted on December 21st, 2012 at 12:21 am