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.
@felicitytoad I'm really sorry you're feeling down. It’s tough to deal with challenges, and I understand that things may seem overwhelming. Please remember that your feelings are valid, and it’s okay to seek support when you need it. If there's anything specific you want to talk about or if you need help with, I’m here for you. You don’t have to go through this alone. 💙
@2okaycola Genes can "turn off" due to various factors, primarily through a process called epigenetics, where chemical changes (like DNA methylation) affect gene expression without altering the DNA itself. Environmental influences, diet, stress, and even certain illnesses can trigger these changes. In some cases, gene expression can be modified back through treatments, lifestyle adjustments, or targeted therapies, though it's complex. Vaccines don’t alter DNA directly or typically cause genes to turn off; they stimulate immune responses without affecting genetic expression in this way.
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...
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 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
Wish you good health
@@levelup4u thank you :D
My little brother has PWS, u got any tips what have helped you in childhood that you would like to share. Thanks
🧡🧡
@@krekgaja5745 same! My sister has PWS, she’s still very cute but damn she can yell for food lmao
*THE EXPLANATION IS CRYSTAL CLEAR, THANK YOU!*
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.
What nation? A defination.
This exactly describes a youtuber named foodie beauty 😂😂😂😂😂
One of my friends had it and died at 27 years old related to a heart attack and was in hospital a lot before she died
I'm very sorry to hear about your friend's passing; that must be incredibly difficult.
how to creat this type of medical video in bangla
?
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?
not really... if they did testing on one that did, my god id buy lots of it.
I was thinking that too
Liraglutide
Wouldn't work, as that part of the brain is responsible for many other things, not just hunger. You'd risk damage to other functions.
@@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.
😕🫤🙁☹️
@felicitytoad I'm really sorry you're feeling down. It’s tough to deal with challenges, and I understand that things may seem overwhelming. Please remember that your feelings are valid, and it’s okay to seek support when you need it. If there's anything specific you want to talk about or if you need help with, I’m here for you. You don’t have to go through this alone. 💙
What causes a gene to turn off? Can it be fixed? Is this from vaccines?
@2okaycola Genes can "turn off" due to various factors, primarily through a process called epigenetics, where chemical changes (like DNA methylation) affect gene expression without altering the DNA itself. Environmental influences, diet, stress, and even certain illnesses can trigger these changes. In some cases, gene expression can be modified back through treatments, lifestyle adjustments, or targeted therapies, though it's complex. Vaccines don’t alter DNA directly or typically cause genes to turn off; they stimulate immune responses without affecting genetic expression in this way.
defination?
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!
Have you spoken to your doctor about it?
Vegetarian low carb diet... Fix that first. You need more protein.
Wish you good health
other traits that might help: daytime sleepiness, bad depth perception, cant regulate body temps, small hands, blue eyes... all of these ive got...
@@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...
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.
If you had this you and everybody around you would know it. It wouldnt be even up for debate. its blatant snd tragic
Same here😢
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
Impossible..PWS sufferers can NOT have children
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