My 19 year old son also has PWS, and we desperately need to raise awareness for this dreaded disease. PWS has such a broad scope of problems ranging from overeating, developmental delays, behavioral issues, and not to mention other health problems related to obesity. We are not asking, but begging for others to take note and help the parents, caregivers and each individual affected by PRADER-WILLI SYNDROME. God Bless Us All!!

We have two sons, Cole, who is 2, and Dean, who is 9 months today. Dean has Prader-Willi Syndrome. We were fortunate that he was born near Boston and transferred to the Children's Hospital there where a geneticist was able to clinically diagnose him at 3 days old. Chromosomal analysis revealed that that geneticist's diagnosis was correct. We watched as our little one who came into the world missing only a chunk of some crucial genes struggled to stay awake even for an hour a day, struggled to keep his oxygen saturations up, couldn't eat and could barely move. Because of his early diagnosis and interventions, we are hopeful, but we know that we have a tough path ahead of us. LIttle is known about this disorder even within the medical community. Please feature PWS on your show so that others will learn about it and we can look towards research that will help find a cure for PWS and give information about how to treat obesity in the general population!

I have a son who was diagnosed with PWS at 3 weeks and although he is only 7 we are only starting to grasp the magnitude of this neurologiacal life threatening disorder that affects 12, 000 births world wide. As my Husband and I had been in the rehabilitative field working with adults living with developmental diabilities; we learned all to well over a 10 year span the importance of behavioral management and consistency 2 major skills to have when raising a child coping with a life that will be forever in search of food they may never have, we have fought the odds thus far by educating ourselves on the importance of eating moving and thinking well, and truly this has been our model. BUT we know this disorder does not have a voice it does not gain awareness like austism, or down syndrome; in fact we are where autism started, trail blazing a voice, needing international media to generate attention, involvement and generate a trend to get communities, governments, and most importantly families educated. Turning a no into a maybe and a maybe into a yes! Yes for awareness, yes for understanding, yes for education, yes for involvement. Gratefully, Mom of Cody PS when we started this journey with our son we read a personal account of what a child felt like with PWS and they said it was like they had pirhannas in their stomach all the time, we never want another person coming into our son's life to ever think that it is a made up symptom that he is NOT affected because he presents well like any other child, that they are ever mindful that they live with this everyday, every second of every minute, every minute of every hour every hour of every day! Sometimes not right away but eventually without notice! Help us change the face of PWS to be that of acceptance, tolerance, understanding and hope!

My five year old daughter has PWS. Our state recently started a chapter of The Prader Willi Syndrome Association and we have reach many families. The entire PWS community could use your help in reaching out to more families. I would also love to see some information about PWS put on this website. The National Prader Willi Syndrome Association (USA) would love to see a show about PWS, I'm sure.

My son Gage was diagnosed with PWS at the age of 3 1/2 weeks old. He is now 3 months old and is eating on his own, without the help of a feeding tube, but it was definately a struggle to get there. It would be amazing for The Doctors to do a show on PWS just so the general population would get some sort of awareness of this terrible disease, so that maybe one day a cure can be found.

My daughter is 22 and has a clinical diagnosis of PWS. She is PWS as far as we are concerned. She has ALL the manifestations, constant hunger, If it walks like a duck, quacks like a duck, then it is a duck..... Our challanges have been many, since she does not receive the services in Florida under FS393 which requires an actual DNA diagnosis. WE fought hard in the mid 90's to get an ammendment to FS393 to even include Prader Willi, and now she cannot benifit from it. Having an individual with PWS is extremely stressful to family life, having to lock cabinets and the fridge is not normal family life! Please do a show on this!!!!

My daughter is 6 and has Prader-Willi Syndrome. She was diagnosed in her first two weeks of life. She was on a feeding tube for the first six months and never made a sound, but also slept most of that six months. She didn't walk until she was three and because of the low muscle tone, still is not 100% on her feet. My wife and I, mostly my wife, have had to be very aggressive in receiving the proper treatment. Even with that, because of our lack of medical training, we have not always made the right decisions. Add to that the lack of knowledgeable doctors familiar with Prader-willi Syndrome and all things considered, we have been lucky. There are children and adults being diagnosed with PWS after years of struggles with an unknown or misdiagnosed condition because of the lack of awareness. Early diagnosis and treatment are only the beginning to a more fulfilling life. We need our medical professionals to do more research and the public to be aware and understand that, yes, just one little candy bar does make a difference. "It takes a village to raise a child" and we need the media to help us educate the village.

Babies born with Prader Willi Syndrome (PWS) have very low muscle tone leading to problems with feeding, breathing and moving. They fail to thrive. Then, as a toddler, they obsession with food starts with behaviour, cognitive, and other challenges. Most will never live independently. There is so little information on PWS that families are left to their own devices to cope. When my sister was born in 1984, she was in the NICU for 3 months on ventilators, NG tubes, everything! My mom has a photo of her and there were more tubes than baby! When she was discharged, the doctors told my mom that my sister had PWS and they dont know if she will ever feed herself, or sit up. They handed my sister to my mom and she was left alone with this little helpless being! There is still limited information on PWS. Being in nursing for 6 years, I have yet to meet a healthcare professional who has heard of PWS! I am helping with Calgary Alberta Canada's first One Small Step walk to raise awareness on PWS. It is hard to find people because PWS is not widely known!