I met someone on Xbox that told me they have this disability along with Autism and another genetic disorder that I can’t remember the name of. I could tell something wasn’t quite normal with him before he told me because he would talk for ages and seemed to remember everything. His vocabulary was well above average as well. Not everyone with PWS suffers intellectually. If anything the guy was smarter than most people I talk to on Xbox by a wide margin. He was like a real life rain man except more articulate.
i have pws: its a ongoing battle i have great days and bad days. im just thankful that i have a minor disorder rather than having cancer, being blind or deaf... i make the best of my life and my parents help me out daily with love and support. #PWSawareness #findacure
So I guess if your child already high school age it’s too late for growth hormone to work. Thanks to all the medical professionals who didn’t bring this up as a possibility; didn’t ask me the right questions when they were aware that he was in NICU and had low muscle tone, didn’t walk until 17 months, didn’t sit up until 11 months old and have PICA.
I worked at a clinic in Pittsburgh that had an entire inpatient unit for PWS patients. Its pretty wild. They would escape and break into neighboring houses and be caught raiding their refrigerators.
Having worked at a Pittsburgh clinic with a dedicated inpatient unit for PWS patients, I've seen firsthand how challenging their behaviors can be, including frequent escapes and raiding neighboring refrigerators.
Do appetite suppressant drugs just not work on people with PWS? Are any researchers working on figuring out how to do a brain surgery that targets the hypothalamus to try and stop the hunger?
@@DogDogGodFog I know that some researchers were trying to figure out how to do a surgery on that part of the brain for both morbidly obese people and people with severe treatment resistant anorexia. I'm not sure how it ultimately turned out, but the woman who had the experimental surgery for obesity was on Oprah. She said it changed the type of food that she craves, so that she actually craves more vegetables and lower calorie items now. I think it involved placing a pacemaker type device, similar to what they use for Tourette's and Parkinsons. For the woman with anorexia, that was an article I read. It said it made her lose her fear of eating and actually have an appetite again for the first time in years. I think it said she actually started asking for pizza in the middle of the operation and the doctors and nurses were shocked that she would do that. Actually, since I posted this original comment, I found yet another article saying that they did a small study with three or four people with Prader Willie, where they tried this type of surgery on them and it just didn't do anything whatsoever and they have no idea why. It made me wonder if maybe for them, hunger and appetite is controlled by other parts of their brain that don't do so in normal people, so maybe that's why the surgery worked for other people, but not them.
This has to be genetic. My Dad had all symptoms of this syndrome, I have always been a very hungry person and it is physical hunger, not emotional eating and my son has all the symptoms except he is highly intelligent and has normal private parts.
My brother has severe pws… it’s not inherited from parents, it’s a genetic mutation. It should be very obvious if you have pw but maybe consult your doctors
I feel i have this problem i have horrible hunger the whole time and makes me to eat my finger skin and feeling weak by hunger feeling mad and unable to do more activities coz fucking hungry and i have a 1,600/1,900cal vegetarian low carb diet with enough food but normal amount arent enough but i control my self even it is a hell and apetite supresor pills just helps me a bit but not at all. Life with hunger its not life! Im in a normal weight but i had to strugle alot with this devilish hunger which its worst every year!! I did blood test and sugar levels are normal, and also fats are normal, thyroid and sexual hormones are normal, b12 and iron are normal. So what the hell it is happening! It scares me that is from brain issues!
@@victoriaalbastra6325 if she does not have the disorder yes: you see tips and other diets dont work well and here is why. cant metabolize food well, weight fluctuates week to week. to help: diet that what people normally eat but less, veggies and some fruit, use kid plates to fool your brain, determination, most important is being active i have a dog so i walk him around my block for 20 mins. im not trying to sound like a know it all, but ive got pws myself so i know first hand on what to do...
