I have to tell you that I was so excited when I saw your show come on the air. I was just flipping through channels and came upon it. I immediately called my parents and told them to watch, and I have never watched your show before.
My brother is 24 years old and was diagnosed with PWS long before I was even born. After he was born, my older sister was born and developed meningitis, which damaged and killed many of her brain cells. The combination of these two handicaps and the lack of understanding I grew up with, caused for a very clashing household. It was normal for there to be a fight about an angry out burst my brother had shown at school, after we had our family dinner. The thing was, he wanted to be just as "normal" as everyone else. That I think is what touched me most. I think it would be really really important for the mom who was on your show to understand that this disorder is entirely beyond their control. It is an obsession and it cause people to act much the same way that a phobia would cause a person to act. The person with the disorder may rationalize that their behavior isn't appropriate or normal, but they really can not help themselves.
In addition to being driven to eat, they are manipulative and persistant. Those were the qualities that we had to deal with the most in my household, since we were generally really good about keeping the food locked up. If you know anything about Munchausen's disease, you know that they are very good about covering their tracts. This is also true for those suffering with PWS. We would find food wrappers hidden all over the house: in between mattresses and in dresser drawers. Not always in his room either, mostly in our rooms (I also have a younger brother). I actually distinctly remember one time when we found him digging through the trash by a neighborhood pool. Every person has to recognize that this is a mentally (and thus physically) restricting and dictating disorder.
At one point, my family moved to Minnesota because we were told, "If you want good care for mentally handicapped individuals, go to a state that starts with an M" I don't know how true that statement is, but I know that we found help there. We, as a family, went to an annual PW picnic and camping expedition. And we met other people who were coping with this syndrom as well (people who were syblings and people who parents, relatives and those coping with this themselves).
I'm not sure if it was due to these interactions, to the really good friends he made or simply because my brother was strong, but he has done more than any other person with PW that I have ever met. He graduated high school with a regular diploma and not a completion certificate. He is working at taking art classes because he is an amazing painter. And he is so much more controlled about his disorder...I suppose I shouldn't say controlled because that's not really true, he does live in a controlled PW home, but he's very aware of it. While he still denys doing wrong when he's practically caught, he is better than I have seen him in years. And I think that's from the encouragement of those around him and the support that my parents have been able to give him. He truly is amazing. And I do love him for it, even when he annoys the crap out of me. I just wanted to share my story with someone who might actually understand (since you've at least heard of this disorder, unlike most people).
And if anyone wants to talk to me about their stories, please feel free to e-mail me!
ItalianTongueFrenchHeart@gmail.com