Messages By: joyceopp

 Hello:

I just wanted to write and thank you for posting the information on the new research.  I have sent it on to our PWS Scientific person, hopefully she will be able to dicipher the code, I am unfortunatley, not gifted in that area, but did read it and it looks promising to me.

My son with PWS is 21 months old, so it would be really great if this actually works for PWS sufferers!!!

You are very kind to have posted it.

Sincerely,

Joyce

 I totally agree, all of us PWS moms cringed and cried when we heard that antiquated and demeaning term when referring OUR kids! 

Thanks!

 Hi Nichelle:

I wish you the very best of luck with your "new life".  I know that you and your kids will be happier and healthier thanks to the Dr. Phil's intervention!!!

If they do a follow-up can you PLEASE ask them to show ALL sides of PWS.  All shows since Danny was born almost 2 years ago have had Maribel screaming at the ice cream truck.  Although, I feel for her family and greatly appreciate their efforts, she is NOT the ONLY face of PWS.

We NEED to show more hopeful stories and they are out there, several people with PWS have graduated from college and yes, they still have their food issues, BUT if Dr. Phil really cares he will help us desperate parents find a cure for this hunger in PWS.

There is a wonderful organization of parents called the Foundation for Prader Willi Research and they/we have raised over $300,000.00 to date and funded 12 research grants to help find that cure for the hunger that would give "our", (yours and mine) kids the chance at an independent life.  Also, all of the experts agree that IF we find a cure for the hunger in PWS, it WILL work in the general population as well.  So, by studying PWS patients, they can FINALLY unlock the cure for obesity in the general population.

Please, please, please help us find that CURE!!!!!!!!!!

Nichelle, take care of yourself and may God Bless You and your beautiful Children!!!!!

Sincerely,

Joyce Opp

Hello Paul: 

  

My son Daniel is two years old and was diagnosed with Prader Willi Syndrome at five weeks old, however his first test for PWS was negative and the test that they used to diagnose him has only been available for about five years.  The new test is called "Methylation test", there are only two labs in the Country that perform this "new" test. 

  

PWS is the leading genetic cause of morbid obesity and more than 70% of people go undiagnosed throughout their lifetime. 

  

This is soo sad because there are now treatments avialable to help PWS sufferers.  My son Daniel began Human Growth Hormone shots at 3 months old.  They had told me that he would be 2.5 before he could walk, he walked at 19 months old, he also gets a lot of therapy and nutritional supplements, he just turned 2 and he knows his letters and numbers on sight and on command. 

  

I applaud you for sharing your story and will look forward to seeing you today on Dr. PHil. 

  

Sincerely, 

  

joyce 

  

Hi Paul:

Thank you so much for respoding!  I am glad that you know about PWS because I really hate to see people suffer and feel more responsible than necessary for something like this.

I will be praying for you to succeed in your quest for better health and a more fun life, not dominated by food.

Take care and God Bless you!

Hello:

 

I notice that you say that there is a follow-up scheduled.....if there is..I hope and pray that all is well with Nichelle and her kids.  I also hope that they are planning to do show some other PWS success stories...there are a lot of them out there thanks to early intervention and Growth Hormone therapies.

 

If anyone knows, please let me know.

 

Thanks.

 

Joyce