What is amazing is that a doctor of neuroscience would even want to deal with the Narcissistic drug scene which is Hollywood? I mean it's a great way to pay off all of that immense student loan debt, but with so much intelligence, I can't imagine why she would want to.
@@wmnoffaith1 PhD has nothing to do with intelligence but with hard work and consistency . If someone has it he/she can do it for sure . Not saying she isn't intelligent but just saying just because someone has a PhD doesn't mean he/she is intelligent . You can be average and have a PhD as you must have seen for sure .
Thank you for mentioning that as a PWS caregiver you HAVE to lock up the food or they can easily eat themselves to death. My child can’t vomit, so it’s even easier to do. I stopped having strangers over because they were horrified that I locked up food and stuck to the dietitians suggested meal plans. Several, even after they read a synopsis about PWS, could not comprehend not giving free access to food because she wasn’t obese. They just assumed it was child abuse. It has been so bad at 1 point in ~2002, I had to sleep with us in the van because all of the shelters had easy, unlocked access to food. I was told if she asked for it, they had to give it to her because the government funding considered it inhumane to refuse or restrict food and if she stole food at night, we would be kicked out if the shelter and possibly have police called for theft. Many shelters told me this. It’s an intense relief that more people who don’t previously encounter a person with PWS might understand instead of jumping to thinking I have an eating disorder I’m pushing on my kid or that I am abusive. It’s hard enough to manage PWS without people, schools, and extended family unwittingly working against your child’s survival.
My sister will turn 40 this year. She has prader-willi. My parents are angels.My sister is cared for by them everyday. We are blessed to have each other. Thank you for this video. I really didn't think anyone knew about this..
@@julianadamico4702 my wife and I will help my sister. I have been moving into a bigger role a little each year. Doctors appointments and helping her get ready and things. If something happens to me or my wife then she would probably have to be cared for at a facility.
@@ambervarney5031our 4th child Josh also has PWS and 10 years old now. I just wrote a book called Living Fierce about it to binge hope to special needs families. 💜
I have watched a few stories and documentaries that include information on PWS. I am amazed and disturbed at how misunderstood it is, especially judging from the comments of people who literally just watched an hour long special on the truths of PWS. I can not imagine the challenges that go along with PWS both having it and caring for someone who does.
I'm so thankful for your video! I just met a girl with PWS during my study for becoming a curative educational carer. The way you describe the syndrom is giving me so much understanding for this girl. For sure, the whole world should try to imagine how the person next to you feels like. Thanks, Dr. Bialik!
I did my Masters Thesis on Prader Willi Syndrome. Researching this subject made me feel despair I never knew could exist. I had the privilege to meet 4 preteen and 2 adults with PWS and hear from their mouths the horrors they face every second of the day. Watching a mother have to tell her 11 year old daughter “no” to food when she truly feels that she’s starving was the first time I felt a heart ache that I could only describe as overwhelming empathy. I just wanted to take away that hunger and anxiety. This awful disorder/syndrome causes so much damage.
There are other 🧬 genetic syndromes similar to PWS caused by errors on other genes. New discoveries are helping clinicians in neuropsychiatry identify children who benefit from discoveries made by Dr. Bialik and other neuroscientists. As a neuropsychiatric nurse practitioner, I mainly work with people with acquired brain injury, but discoveries made by neuroscientists like her shed much light on so many other conditions as well. PWS interests me due to the other symptoms associated with the disorder and its overlap with physical damage to the prefrontal cortex seen in acquired brain injuries and de novo genetic intellectual and behavioral disabilities. Hats of to incredible people like Dr. Bialik. Thanks for all you do not just from families but from all parts of the medical community as well.
I appreciated your speech, Mayim. By the way, one of the ladies in my church choir just found out that her baby granddaughter has Prader Willi Syndrome. The baby initially had a blood clot and a poor appetite, but she might have an insatiable appetite at age two years. I have her, along with other PWS sufferers, in my thoughts and prayers.
@@mattamoroso251Hi Matt! Maybe you would like to share a little bit more about you and how this diagnosis affect you in your daily life or in opposite, how your life look like despite the diagnosis? My daughter has pws, she is 6 months old and I really happy to hear some positive stories of people who live a satisfying life despite the diagnosis. All the best for you!
This was so informational. One thing that stuck out though was that she said “PWS is the leading cause of childhood obesity” which isn’t exactly true. It’s the leading GENETIC cause, but of the 1 in 5 children in America with obesity-only a small handful of them have PWS. The other causes are lifestyle, emotional, medication side effects...etc.
Back in 1990 I worked and lived in Monroe Louisiana I volunteer to work with United Way and helped to set up PWS home for 6 suffers and there care set up and running and funding I loved the work and miss the Home Thank you Mayim Bialik for reminder
Thank you Mayim for talking about this syndrome. I have a son that would eat everything in sight but he only has a touch of social awckwardness. With a child that would eat everything in sight and another one that was very picky, was very difficult to set opposite rules to the only two children I had at the time. What she wouldn't eat, he would be right there to eat it. People would just make fun of him because he would eat constantly. I asked my doctor about this problem and he did not provide me with any answers. He said he was just a growing boy. Had I known about this syndrome, I wouldn't blame myself for being a mother of two children with two different eating problems I wasn't able to fix. By accident, I came across this syndrome and everything fell into place. It was like a cloud had lifted off my shoulders. It was neither my fault or his. It was this terrible syndrome a person has to deal with every minute of the day. Thank you again, Mayim for talking about it in your show.🙂👍
Trust me, if your son had pws you would know before he began eating. Pws is not a eating disorder, it's a deletion on chromosome 15. Pws comes with far worse problems than over eating, my son has hormone deficiencies, hypertonia, scoliosis, speech problems, learning disability, the list goes on.
@@Mr-Mr66 Since most things come on a spectrum I would imagine that while most of the time it’s very obvious like you describe, there is the occasional person who doesn’t have as many accompanying conditions to the appetite. Basically I have no reason to distrust either of you. I’ve seen where it’s super obvious, as well as a profile of a case where the diagnosis didn’t come until well into the school years.
Thank you for doing this video, I am a big fan of Big Bang. Although this condition is worldwide not many people have heard of it or just think its an eating disorder and dont realise the other effects it has on these poor children as they grow. Thank you for brining awareness to people who may never have heard of this. I have a niece with PWS and I know how difficult times can be
hi my name is angelina. Mayim Bialik I'm a huge huge fan I watch the big bang theory every Thursday you are fun and hilarious I live new your and I suffer from prader willy syndrome im one of the high functioning ones. I'm very smart in 22 years old I live at home. when I saw that you support people with this syndrome I had to comment. I'm a huge fan and I would like to meet you and I would like you to sign my big bang theory board game.
Such a sad disease... Especially for people like me, who suffer from binge eating disorder, PWS sounds like a total nightmare and in a way, we go through the similar feeling every single day trying to find a way out. Stay strong!
My niece Candice Caffas with PWS has gone missing in the Conneaut Lake Pennsylvania area. We could use help to raise awareness of her search and the issues of those who are affected by PWS.
My heart goes out to you! I hope they find her soon, alive, well and unscathed. I worked with folks who have this disorder at a state facility. They are at extreme risk esp when they go missing. My prayers for her safe return and for emotional support to you and your family.
Would the state of being in ketosis help decrease constant hunger pain/signal like it does with those on Keto diets? God bless everyone that helps this cause. ❤️
no the fullness siganal is blocked and our bodies make the times as much hunger hormones and no leption hormones no medicine or surgery can help at this point in time sadly
I don't feel like this everyday. Everyone with it are different. But it's more for a growth hormone deficiency. I have lived with it for 40 years and I live a normal life just like anyone else
Hi Jonathan! It’s great that you shared a bit about yourself! My daughter has PWS and she is 6 months old and it really helps me to hear about some examples of people who live a normal life despite their diagnosis. It helps me to see her future in bright colors and I know that there are people who can live an independent and satisfying life but it is important for us, parents and our children to hear such stories. All the best for you!
How about suppot to the families that lost from PWS my son passed away from complications of PWS and I'm still grieving I don't know how to get through this
My oldest Son was is 15, 6 ft tall and inching towards 300 lbs. we had him checked lightly but they said he had no other symptoms. I wonder if there is another test for it. He will literally demolish my fridge eating, even on a stimulant Medication for his adhd
I heard that PWS exists on a spectrum. Do you have any additional information on the severity of the rare disease? Thanks in advance. Oh, and thank you for this information.
I’m a single dad to a 12 year old girl with PWS. She was diagnosed very early (2 weeks old) and has had support and medication her whole life and I’m very proud to say she is a little champ! We have been to meetups with other PWS families and there is definitely a spectrum to the syndrome, with different traits more dominant in different children. My daughter has her eating very much under control, doesnt seem to have that desperate hunger that some have, but she does get upset if she doesn’t get food at her routine times and she does have a big appetite and love her food but her weight is still under control.
I have pws, and yes it works like that, I used to be hungry all the time 24/7 and the only time I'd get full would be Thanksgiving but by that point I would be puking practically half of it up. It's a bit better now I can get full more often, but sometimes it's still stubbornly not letting me feel full, although sometimes it's the flavor I crave not the act of filling my stomach. Mine also affects the reward system of my brain so anything delicious or fun is much better than it should be until it eventually wears off. I was also supposed to have a 3 year old mentality but I graduated high school in normal classes, although my iep made me have physical therapy once every two weeks.
@thefury4424 Yeah as someone with pws it definitely does hurt not being able to eat when you're normally able to, but having a pretty unsecured life does help a bit getting used to it.
You mention " Prader Willi syndrome is the leading cause of childhood obesity". I don't understand "leading cause of childhood obesity" when it is only 1 in 15,000 births. Can you explain your statement?
@@tenthdimension9836 No, genetic disorders are not the number one cause of childhood obesity. PWS is, however, the leading genetic disorder than causes obesity. Poor diet and lack of exercise, which is totally within a parent’s control, cause most childhood obesity and that’s really disappointing.
Thank you for your continuing support for people with this difficult disorder and for their families and careproviders. I know this maybe nitpicky but the medical community esp at the state of ca system pronounces this as "Pray der" Willi the "a" is long. I know, kinda' like tomaaatoe vs tomau toe....😅 In the medical field a long time and the way some words are pronounced is sometimes like nails on a chalkboard in an OCD way. I'll have to look this one up in the Tabers Medical dictionary. I have always enjoyed your acting, humor and intellect! Was thrilled that you hosted Jeopardy and loved watching it with you hosting!
Do you have any information on the role of MSH and PWS? I ask because I suffered a TBI and now have hypopituitarism. I am currently trying to get testing for MSH deficiency. When I research MSH deficiency I find information about PWS. I have struggled hunger and digestive issues. Cheers!
20 pounds in one weekend.....that is a serious disorder. Can you imagine how quickly they could eat to death without someone to supervise?? I've read a lot about this fascinating disorder. I hear they have started using Adderall as a treatment and it actually helps a lot to curb the hunger as well as reduce weight gain.
My son is too.he has prayer willi syndrome 🙏 😢 but he live. He just 2 age.I so sorry about your son.I don't know why children's prayer willi.I cry 😢 everyday
Don't know about the future That's anybody's guess Ain't no good reason for getting all depressed Pick up your pad and pencil I'll give you a peice of my mind Cause in my opinination The sun is gonna surely shine stop all your fussing snap on a smile come out and walk in the sun for a while don't fight the feeling, you know you wanna have a good time cause imn my opinination the sun is gonna surely shine.
Go to the foundation's website. Scoliosis is a major issue in PWS patients. I've got a loved one with it and he is in a brace because of his Scoliosis. There is also often severe mental delays too.
I don't think she meant to say that Prader Willi Syndrome was the number one cause of childhood obesity. I think that she meant to say that genetic factors are the number one cause of childhood obesity.
My friend had to make a hard diet because of her obesity. It became much easier for her, after she had seen a film about the severe sufferings of people with P.W.S., who have to diet lifelong
What if I feel I have this, but only control myself because of another aspect of another disorder ? Where I do not want to be fat and have a fear of that as well. But I’m never ever full. Even right now I just ate a panzerotti and wedges an hour ago and I feel starving. I never feel “full” I feel bloated and stuffed for about 5-15 mins then I can eat a meal again and I don’t always feel like that, sometimes I don’t even feel full, I’ve just realized that the amount I have eaten is just sad. I can make a whole pan of scalloped potatoes and eat it.
Several things here first of all you need to make sure that you are not eating high fructose corn syrup because if you eat a little too much of it absolutely revs up the appetite and will make you want to eat and eat and eat . So if you're eating foods that have this then you're constantly getting high fructose corn syrup and so you're constantly hungry even if your gut feels like it's about to rip open because you've eaten that much food .
High fructose corn syrup is not the same as regular corn syrup and the problem is HFCS cannot get absorbed in the gut so it shoots straight to the liver causing fatty liver which is no joke because that is actually considered to be early stage of liver damage
Eating too many foods that have sugars in the such a starches can also increase hunger and that's why you need to balance it with some protein . After a while you'll start to notice if you cut down on certain starches like spaghetti or potatoes and increase your protein instead you sometimes will notice you stay satisfied longer .
Believe it or not they claim our brain often is confused and not able to tell the difference between hunger and thirst so the times I felt on usually hungry when I knew I shouldn't be I made sure I drank a lot of extra fluids and waited a while and sometimes this really did make a difference
thats not true it comes from the mother and also you can get it if you have two coppies of the chromozone 15 ass well and you can get it if you have a tramatic brain injurey
It's a great question. And, no, we aren't all a "little bit PWS" in the sense of control. People with PWS will eat so much that they burst their stomachs. Or they will drink so much water they end up with water intoxication. There are many other symptoms, especially behavioral and developmentally, that make it incredibly difficult to deal with. Sure, inability to regulate one's urges is a universal human experience...but not nearly to this degree.
No. PWS results from missing pieces on chromosome 15. People either have it or they don't. It is a natural human response to like food and think about it, but people with PWS can eat so much they can rupture their stomachs, and will eat non-food items as well, such as trash and other things.
you can’t be “a bit OCD”. you can have traits that can be common in people with OCD, but these are not what defines ocd. PWS is, as with OCD, a neurological disorder, except one is born with this and there aren’t cures or therapies that can virtually minimise all symptoms. being unable to control snacking is not the same as having insatiable hunger your entire life. to suggest such a thing is ignorant
With no disrespect, but your poor relationship with food is no where near what it is like to have Prader Willi Syndrome. It’s not a poor relationship with food for us. You have the ability to feel full, your body will stop you from eating before you eat too much. You have the ability to feel satisfied after a meal. You don’t have an uncontrollable drive for food. You can have more than 1,400 calories a day. You can think about other things other than food. We can’t do any of those things and we do have that uncontrollable drive. You should educate yourself, before assuming you know what having the syndrome is, re “a poor relationship with food.
I am standing up for our community the original commenter does not have PWS and just has problems with eating healthy. She does not go through the stuff we do. I am saying that for us, including you, that it’s more than just a poor relationship. So she should educate herself before assuming what having PWS is like for us.
@@natalieolsen3094 I’m not sure he means to be rude but are you upset by the word ‘disease’ in the case of PWS? I prefer the term ‘disorder’ for the syndrome I have been diagnosed with, rather than ‘disease’. Disease feels more appropriate for something like cancer or Covid - something that grows. Is that the vibe you get too from the term, ‘disease’?
It's so cool that one can be both an actress and a doctor in neuroscience! Go, Mayim!
What is amazing is that a doctor of neuroscience would even want to deal with the Narcissistic drug scene which is Hollywood? I mean it's a great way to pay off all of that immense student loan debt, but with so much intelligence, I can't imagine why she would want to.
Right every actor or actress should have a part time Job because acting shouldn't pay enough to just act to get by
She will always be my blossom
She should look more into it. Its not all about being hungry all the time
@@wmnoffaith1 PhD has nothing to do with intelligence but with hard work and consistency . If someone has it he/she can do it for sure . Not saying she isn't intelligent but just saying just because someone has a PhD doesn't mean he/she is intelligent . You can be average and have a PhD as you must have seen for sure .
Thank you for mentioning that as a PWS caregiver you HAVE to lock up the food or they can easily eat themselves to death. My child can’t vomit, so it’s even easier to do. I stopped having strangers over because they were horrified that I locked up food and stuck to the dietitians suggested meal plans. Several, even after they read a synopsis about PWS, could not comprehend not giving free access to food because she wasn’t obese. They just assumed it was child abuse. It has been so bad at 1 point in ~2002, I had to sleep with us in the van because all of the shelters had easy, unlocked access to food. I was told if she asked for it, they had to give it to her because the government funding considered it inhumane to refuse or restrict food and if she stole food at night, we would be kicked out if the shelter and possibly have police called for theft. Many shelters told me this. It’s an intense relief that more people who don’t previously encounter a person with PWS might understand instead of jumping to thinking I have an eating disorder I’m pushing on my kid or that I am abusive. It’s hard enough to manage PWS without people, schools, and extended family unwittingly working against your child’s survival.
Man my respect for her just multiplied!!!!!
✊️
My sister will turn 40 this year. She has prader-willi. My parents are angels.My sister is cared for by them everyday. We are blessed to have each other. Thank you for this video. I really didn't think anyone knew about this..
My neice has PWS too, she is only 5.
Boscoe, what's going to happen to your sister after your parents die ?
@@julianadamico4702 my wife and I will help my sister. I have been moving into a bigger role a little each year. Doctors appointments and helping her get ready and things. If something happens to me or my wife then she would probably have to be cared for at a facility.
Our son Josh has PWS 1:51 too he’s 10. I just wrote a book about it called Living Fierce to bring hope to special needs families (especially PWS 💜)
@@ambervarney5031our 4th child Josh also has PWS and 10 years old now. I just wrote a book called Living Fierce about it to binge hope to special needs families. 💜
Mayim I work with people with PWS so thank you for helping and informing the world about the people I love and work for daily.
I have watched a few stories and documentaries that include information on PWS. I am amazed and disturbed at how misunderstood it is, especially judging from the comments of people who literally just watched an hour long special on the truths of PWS. I can not imagine the challenges that go along with PWS both having it and caring for someone who does.
avaorchid it is very difficult but we do it everyday my son is 14 with pws
I'm so thankful for your video! I just met a girl with PWS during my study for becoming a curative educational carer. The way you describe the syndrom is giving me so much understanding for this girl. For sure, the whole world should try to imagine how the person next to you feels like. Thanks, Dr. Bialik!
Curative educational carer.. .that is some newspeak.
I did my Masters Thesis on Prader Willi Syndrome. Researching this subject made me feel despair I never knew could exist. I had the privilege to meet 4 preteen and 2 adults with PWS and hear from their mouths the horrors they face every second of the day. Watching a mother have to tell her 11 year old daughter “no” to food when she truly feels that she’s starving was the first time I felt a heart ache that I could only describe as overwhelming empathy. I just wanted to take away that hunger and anxiety. This awful disorder/syndrome causes so much damage.
There are other 🧬 genetic syndromes similar to PWS caused by errors on other genes. New discoveries are helping clinicians in neuropsychiatry identify children who benefit from discoveries made by Dr. Bialik and other neuroscientists. As a neuropsychiatric nurse practitioner, I mainly work with people with acquired brain injury, but discoveries made by neuroscientists like her shed much light on so many other conditions as well. PWS interests me due to the other symptoms associated with the disorder and its overlap with physical damage to the prefrontal cortex seen in acquired brain injuries and de novo genetic intellectual and behavioral disabilities. Hats of to incredible people like Dr. Bialik. Thanks for all you do not just from families but from all parts of the medical community as well.
My daughter is 37 with PWS. She lives at home with me…
Thank you for spreading awareness of PWS!!
❤️❤️ 🥕🥒🍏🍎🍉 ❤❤
I love her brains & humor. She's awesome
Mayim Bialik has the brains and beauty plus humor.
I appreciated your speech, Mayim.
By the way, one of the ladies in my church choir just found out that her baby granddaughter has Prader Willi Syndrome. The baby initially had a blood clot and a poor appetite, but she might have an insatiable appetite at age two years. I have her, along with other PWS sufferers, in my thoughts and prayers.
I have pws
@@mattamoroso251Hi Matt! Maybe you would like to share a little bit more about you and how this diagnosis affect you in your daily life or in opposite, how your life look like despite the diagnosis? My daughter has pws, she is 6 months old and I really happy to hear some positive stories of people who live a satisfying life despite the diagnosis. All the best for you!
This was so informational. One thing that stuck out though was that she said “PWS is the leading cause of childhood obesity” which isn’t exactly true. It’s the leading GENETIC cause, but of the 1 in 5 children in America with obesity-only a small handful of them have PWS. The other causes are lifestyle, emotional, medication side effects...etc.
Back in 1990 I worked and lived in Monroe Louisiana I volunteer to work with United Way and helped to set up PWS home for 6 suffers and there care set up and running and funding I loved the work and miss the Home Thank you Mayim Bialik for reminder
Great Job, Mayim. Thanks for raising awareness about PWS.
I have always loved her but this just made me love her more!! ❤❤
I lost my 6 year old son to PWS this month. I really miss him
My heart gose out to you mama your baby was taken to soon this deadly decies can be dreadful hes at peace and not fighting anymore.
Hi, I'm so sorry for your loss. What was the reasoning, if I may ask. Was he obese for his age?
@@maryclairehaug966 Thank you
@@Jmo76_1 He had respiratory distress leading to cardiac arrest.
@@sarcm1957 so said he´s got his wings the fight is done
My daugther has PWS. Now she is 30 years. Its so hard to live With this Syndrom.
Thank you Mayim for talking about this syndrome. I have a son that would eat everything in sight but he only has a touch of social awckwardness. With a child that would eat everything in sight and another one that was very picky, was very difficult to set opposite rules to the only two children I had at the time. What she wouldn't eat, he would be right there to eat it. People would just make fun of him because he would eat constantly. I asked my doctor about this problem and he did not provide me with any answers. He said he was just a growing boy. Had I known
about this syndrome, I wouldn't blame myself for being a mother of two children with two different eating problems I wasn't able to fix. By accident, I came across this syndrome and everything fell into place. It was like a cloud had lifted off my shoulders. It was neither my fault or his. It was this terrible syndrome a person has to deal with every minute of the day. Thank you again, Mayim for talking about it in your show.🙂👍
Trust me, if your son had pws you would know before he began eating.
Pws is not a eating disorder, it's a deletion on chromosome 15.
Pws comes with far worse problems than over eating, my son has hormone deficiencies, hypertonia, scoliosis, speech problems, learning disability, the list goes on.
@@Mr-Mr66 Since most things come on a spectrum I would imagine that while most of the time it’s very obvious like you describe, there is the occasional person who doesn’t have as many accompanying conditions to the appetite. Basically I have no reason to distrust either of you. I’ve seen where it’s super obvious, as well as a profile of a case where the diagnosis didn’t come until well into the school years.
@@nerysghemor5781 I hate this disability being described as an "eating condition"
But yea you're right, there is a spectrum
@@Mr-Mr66 I understand what you mean about not liking that terminology…sorry, I thought you were suggesting the OP was bullshitting their story.
Thank you for doing this video, I am a big fan of Big Bang. Although this condition is worldwide not many people have heard of it or just think its an eating disorder and dont realise the other effects it has on these poor children as they grow. Thank you for brining awareness to people who may never have heard of this. I have a niece with PWS and I know how difficult times can be
She's an amazing human. She's also a scientist. She wrote her thesis on Prader Willi Syndrome. My g baby has this.
My beautiful niece has Prader-Willi syndrome...........couldn't love this woman more.
hi my name is angelina. Mayim Bialik I'm a huge huge fan I watch the big bang theory every Thursday you are fun and hilarious I live new your and I suffer from prader willy syndrome im one of the high functioning ones. I'm very smart in 22 years old I live at home. when I saw that you support people with this syndrome I had to comment. I'm a huge fan and I would like to meet you and I would like you to sign my big bang theory board game.
Such a sad disease... Especially for people like me, who suffer from binge eating disorder, PWS sounds like a total nightmare and in a way, we go through the similar feeling every single day trying to find a way out. Stay strong!
My niece Candice Caffas with PWS has gone missing in the Conneaut Lake Pennsylvania area. We could use help to raise awareness of her search and the issues of those who are affected by PWS.
Update please 🙏
My heart goes out to you! I hope they find her soon, alive, well and unscathed. I worked with folks who have this disorder at a state facility. They are at extreme risk esp when they go missing. My prayers for her safe return and for emotional support to you and your family.
A compassionate and helpful explanation. Thank you.❣️
Would the state of being in ketosis help decrease constant hunger pain/signal like it does with those on Keto diets? God bless everyone that helps this cause. ❤️
no the fullness siganal is blocked and our bodies make the times as much hunger hormones and no leption hormones no medicine or surgery can help at this point in time sadly
My infant nephew was just diagnosed with this today. I just pray he doesn't have it as severe as what i've seen others have it.
NIKKI withington my name is Matthew amoroso I pray that you guy get the treatment I was diagnosed sixteen and now 26
how is he doing now?
@@eboniz he is doing ok thank you 👍 He doesn’t have it as severe as some 🙏
@@GVTarot glad to here it! wish you guys all the best.
You are one incredible lady ❤
My heart breaks for these kids. I know life isn't fair, but damn. Why kids.
💔
Thank you for doing this & educating about it!
Oh my god so proud that you are a dr too
I don't feel like this everyday. Everyone with it are different. But it's more for a growth hormone deficiency. I have lived with it for 40 years and I live a normal life just like anyone else
Hi Jonathan! It’s great that you shared a bit about yourself! My daughter has PWS and she is 6 months old and it really helps me to hear about some examples of people who live a normal life despite their diagnosis. It helps me to see her future in bright colors and I know that there are people who can live an independent and satisfying life but it is important for us, parents and our children to hear such stories. All the best for you!
She is the only person in hollywood I would like to meet in person. She is amazing.
My sister has PWS, and my dad loves the Big Bang
which city R U in
I suffer from prader Willi sydrome thank you so much I love you I was sixteen if I can meet you please reply
My son past away from the complications from PWS
Doctor and our favorite actress thank you so much we appreciate absolutely everything truly a gift given back to the Humanity
How about suppot to the families that lost from PWS my son passed away from complications of PWS and I'm still grieving I don't know how to get through this
Mayim looking amazing as always and looking so pretty and gorgeous all the time 24-7!!!
My cousin's youngest daughter PWS.
Thank you for this video🙂
My oldest Son was is 15, 6 ft tall and inching towards 300 lbs. we had him checked lightly but they said he had no other symptoms. I wonder if there is another test for it. He will literally demolish my fridge eating, even on a stimulant Medication for his adhd
I heard that PWS exists on a spectrum. Do you have any additional information on the severity of the rare disease? Thanks in advance. Oh, and thank you for this information.
I’m a single dad to a 12 year old girl with PWS. She was diagnosed very early (2 weeks old) and has had support and medication her whole life and I’m very proud to say she is a little champ! We have been to meetups with other PWS families and there is definitely a spectrum to the syndrome, with different traits more dominant in different children. My daughter has her eating very much under control, doesnt seem to have that desperate hunger that some have, but she does get upset if she doesn’t get food at her routine times and she does have a big appetite and love her food but her weight is still under control.
I have pws, and yes it works like that, I used to be hungry all the time 24/7 and the only time I'd get full would be Thanksgiving but by that point I would be puking practically half of it up. It's a bit better now I can get full more often, but sometimes it's still stubbornly not letting me feel full, although sometimes it's the flavor I crave not the act of filling my stomach. Mine also affects the reward system of my brain so anything delicious or fun is much better than it should be until it eventually wears off. I was also supposed to have a 3 year old mentality but I graduated high school in normal classes, although my iep made me have physical therapy once every two weeks.
@thefury4424 Yeah as someone with pws it definitely does hurt not being able to eat when you're normally able to, but having a pretty unsecured life does help a bit getting used to it.
You mention " Prader Willi syndrome is the leading cause of childhood obesity". I don't understand "leading cause of childhood obesity" when it is only 1 in 15,000 births. Can you explain your statement?
Jen Lang-Ree it's the leading genetic cause. I think that's what she meant to say
I think a more accurate statement would be "genetic factors are the number one cause of childhood obesity" I think she misspoke.
@@tenthdimension9836 No, genetic disorders are not the number one cause of childhood obesity. PWS is, however, the leading genetic disorder than causes obesity. Poor diet and lack of exercise, which is totally within a parent’s control, cause most childhood obesity and that’s really disappointing.
@@tenthdimension9836 wrong sometime it isn't pass down can be a hiccup thru scientifically
Thank you for your continuing support for people with this difficult disorder and for their families and careproviders.
I know this maybe nitpicky but the medical community esp at the state of ca system pronounces this as
"Pray der" Willi the "a" is long. I know, kinda' like tomaaatoe vs tomau toe....😅 In the medical field a long time and the way some words are pronounced is sometimes like nails on a chalkboard in an OCD way. I'll have to look this one up in the Tabers Medical dictionary. I have always enjoyed your acting, humor and intellect! Was thrilled that you hosted Jeopardy and loved watching it with you hosting!
Do you have any information on the role of MSH and PWS? I ask because I suffered a TBI and now have hypopituitarism. I am currently trying to get testing for MSH deficiency. When I research MSH deficiency I find information about PWS. I have struggled hunger and digestive issues. Cheers!
Ok, so this is the PSA.
Where is the 2h long detailed explanation of the pathophysiology?
So am i the only one that fixated on how many times pwsa-usa was said there in the last 30-45 seconds. Almost like it was meant as a tongue twister.
Mayim is gorgeous! 😍
I dont have this but I'm always hungry, except for specific reasons, who else and experienced this?
My cousin has PWS and it’s really sad to see him like that...
20 pounds in one weekend.....that is a serious disorder. Can you imagine how quickly they could eat to death without someone to supervise?? I've read a lot about this fascinating disorder. I hear they have started using Adderall as a treatment and it actually helps a lot to curb the hunger as well as reduce weight gain.
My son is death, he have prader willi syndrome before. Always fell hungry.
My son is too.he has prayer willi syndrome 🙏 😢 but he live. He just 2 age.I so sorry about your son.I don't know why children's prayer willi.I cry 😢 everyday
I work in a home with 8 residents who have PWS. Its so hard for them but we get through it
beautiful voice
I loved Blossom.
🌸
I love this woman
What test can I take to see if this is me?
I love you Amy! ❤❤❤
You know me I have pws
Amy Shrewmuer thanks didn't know U knew
Ur the best lady
Don't know about the future
That's anybody's guess
Ain't no good reason for getting all depressed
Pick up your pad and pencil
I'll give you a peice of my mind
Cause in my opinination
The sun is gonna surely shine
stop all your fussing snap on a smile
come out and walk in the sun for a while
don't fight the feeling, you know you wanna have a good time
cause imn my opinination the sun is gonna surely shine.
Whats your opinion about the famous Terrare? Evidently hungry enough to eat baby. He died in 1798 of TB
Anyone else remember watching her on MacGyver.. she was hanging off a cliff on one episode lol
hey blossom 🙋🙋🙋🙋
🙋♀️
I felt like I was dying
“The leading cause of childhood obesity..” “1 in 15,000 births” these two statements are at odds. Look to the standard American diet/processed foods.
She just left off genetic on accident
Such a cruel disorder. Must be hard to live with.
Wonder woman so so talented
Blossom
love amy
Please help me…i teach a 4 year old with PWS - how can I help him - he can’t walk very well, cant get off the floor, and gets tired very quickly.
Check out the link in the description. They will help you, I’m sure. Good luck.
Go to the foundation's website. Scoliosis is a major issue in PWS patients. I've got a loved one with it and he is in a brace because of his Scoliosis. There is also often severe mental delays too.
What a sad disorder, these poor kids/people. :(
She stole the show in Beaches
So most kids in the US has PWS
I don't think she meant to say that Prader Willi Syndrome was the number one cause of childhood obesity. I think that she meant to say that genetic factors are the number one cause of childhood obesity.
I’ve just found out that my 7weeks son has PWS 😓😭
Amelia - Congratulations on the birth of your son! please contact us at info@pwsausa.org we would love to support you.
How is PWS actually diagnosed ?
A chromosome test.
Via a Karyotype aka a chromosome panel
genetic testing
Usually at birth because of the low muscle tone( floppy)
My son is massive
"Associaition" ?
My friend had to make a hard diet because of her obesity. It became much easier for her, after she had seen a film about the severe sufferings of people with P.W.S., who have to diet lifelong
What if I feel I have this, but only control myself because of another aspect of another disorder ? Where I do not want to be fat and have a fear of that as well.
But I’m never ever full. Even right now I just ate a panzerotti and wedges an hour ago and I feel starving. I never feel “full” I feel bloated and stuffed for about 5-15 mins then I can eat a meal again and I don’t always feel like that, sometimes I don’t even feel full, I’ve just realized that the amount I have eaten is just sad.
I can make a whole pan of scalloped potatoes and eat it.
My son never feels full he says he feels weak if he doesn't eat like every 3hours
Several things here first of all you need to make sure that you are not eating high fructose corn syrup because if you eat a little too much of it absolutely revs up the appetite and will make you want to eat and eat and eat
.
So if you're eating foods that have this then you're constantly getting high fructose corn syrup and so you're constantly hungry even if your gut feels like it's about to rip open because you've eaten that much food .
High fructose corn syrup is not the same as regular corn syrup and the problem is HFCS cannot get absorbed in the gut so it shoots straight to the liver causing fatty liver which is no joke because that is actually considered to be early stage of liver damage
Eating too many foods that have sugars in the such a starches can also increase hunger and that's why you need to balance it with some protein .
After a while you'll start to notice if you cut down on certain starches like spaghetti or potatoes and increase your protein instead you sometimes will notice you stay satisfied longer .
Believe it or not they claim our brain often is confused and not able to tell the difference between hunger and thirst so the times I felt on usually hungry when I knew I shouldn't be I made sure I drank a lot of extra fluids and waited a while and sometimes this really did make a difference
Is ozempic not the cure for this now?
I'm a fan U'RE hilarous I'd would love to meet U 476 Williams Street
Scary
@@pamt1229 What do U mean
She moves funny
PWS is caused by a partly missing chromosome 15 passed on by the father.
thats not true it comes from the mother and also you can get it if you have two coppies of the chromozone 15 ass well and you can get it if you have a tramatic brain injurey
What's up with that shoulder
I love her. Watching from London UK. What percentage of the population have PWS ? Aren’t we all a bit PWS like we are all a bit OCD ?
It's a great question. And, no, we aren't all a "little bit PWS" in the sense of control. People with PWS will eat so much that they burst their stomachs. Or they will drink so much water they end up with water intoxication.
There are many other symptoms, especially behavioral and developmentally, that make it incredibly difficult to deal with. Sure, inability to regulate one's urges is a universal human experience...but not nearly to this degree.
No. PWS results from missing pieces on chromosome 15. People either have it or they don't. It is a natural human response to like food and think about it, but people with PWS can eat so much they can rupture their stomachs, and will eat non-food items as well, such as trash and other things.
you can’t be “a bit OCD”. you can have traits that can be common in people with OCD, but these are not what defines ocd. PWS is, as with OCD, a neurological disorder, except one is born with this and there aren’t cures or therapies that can virtually minimise all symptoms. being unable to control snacking is not the same as having insatiable hunger your entire life. to suggest such a thing is ignorant
@@eboniz extremely ignorant
Great reply
I have a poor relationship with food too. :(
With no disrespect, but your poor relationship with food is no where near what it is like to have Prader Willi Syndrome. It’s not a poor relationship with food for us. You have the ability to feel full, your body will stop you from eating before you eat too much. You have the ability to feel satisfied after a meal. You don’t have an uncontrollable drive for food. You can have more than 1,400 calories a day. You can think about other things other than food. We can’t do any of those things and we do have that uncontrollable drive. You should educate yourself, before assuming you know what having the syndrome is, re “a poor relationship with food.
@@cerridwyndonaldson8420 your face matches your comment so perfectly.
@@cerridwyndonaldson8420 h.e..y speak for URself I have Prauder - Willi syndrome
& I feel full
I am standing up for our community the original commenter does not have PWS and just has problems with eating healthy. She does not go through the stuff we do. I am saying that for us, including you, that it’s more than just a poor relationship. So she should educate herself before assuming what having PWS is like for us.
Just because you're unattractive doesn't mean I believe your feelings on the subject. I'd rather Google the info miss Education.
Wow your better looking on this cam ❤they dont do you justice your a beut .
Rare but it’s the leading cause of childhood obesity that doesn’t make sense it’s very rare less than 20,000 cases a year not 1 out of 15,000 births
One of the cruelest most awful diseases. Makes you question a lot of things.
Its not at all is disorder that's so rude to say barry
@@natalieolsen3094 I’m not sure he means to be rude but are you upset by the word ‘disease’ in the case of PWS? I prefer the term ‘disorder’ for the syndrome I have been diagnosed with, rather than ‘disease’. Disease feels more appropriate for something like cancer or Covid - something that grows. Is that the vibe you get too from the term, ‘disease’?
How is Prader-Willi the leading cause of childhood obesity...?
leading GENETIC cause, an important distinction
Did you listen to her explain it?
Would be good if the camera wasn't so close, as it would be nice to not be able to watch your eyes go back and forth as you read the teleprompter.
Maybe you ought to understand hypnosis to see if there is an unconscious cure for this .
As someone with pws that wouldn't work most likely
"The leading cause of obesity"? But it only affects 1 out of every 15K? Uh, those two don't jive.
Leading cause of obesity? Yet only 1 in 15k? I don’t understand.