I mean to be fair even without hearing official info it wouldn't be a surprise if that did happen sadly. She was already almost 300 pounds when this was filmed, no cure as far as I know, was active in a normal way but not to the point where she was burning more calories then she was taking in, she had moments where she was on her own so no one could keep track of how much or what she was eating, and other then forcibly holding her back from eating and keeping her locked up 24/7 365 there wasn't much that could be done. I'm not sure when this documentary was filmed or when she sadly passed but eating a lot combined with not being super active can put on the pounds really quickly and age doesn't play a role then if you get to the point where your weight is making being active period hard it'll get even worse (i've heard of a few people from the fat positivity community who sadly passed away due to complications from it who were only aged early 20's to early 30's I think one was even in her late teens maybe 19 or so who were already on oxygen before they passed). Really sad 😕
My new baby boy has been diagnosed with this and it's devastating. The hunger aspect is terrible enough, but there are so many more terrible symptoms as well. I just want him to have a happy fulfilling life and I don't know if that will be possible 😢
First time I've heard of this was from a high school assembly presented by a student with this disease. He was very large and probably bullied, but he still gave his presentation to the whole school. He was very brave and I hope he is doing well.
This is a cruel disease. The first time I heard of it was in the 80s. A friend babysat a young teen who would fight you to get to food. All food was locked up. Imagine being hungry all the time. Sad.
I agree, the disease is cruel. Diabolical, almost. Like it was deliberately designed to cause within someone an unstoppable and gluttonous desire for food to the detriment of their own life. Yes, it's purely scientific. But still. There is something very, very wrong with this condition. So much so that, to me, it's unlike other genetic disorders that I'm familiar with.
that’s not it. try fatal familial insomnia. ps, it’s not a competition for who has the worse disorder. although i will say the mental challenges associated with prader-willi can perhaps lessen the impact of suffering in a way that is disturbed more in ffi due to the lack of sleep literally driving you insane and demented prior to actually killing you, which prader-willi does not necessarily do. but honestly. not a competition and all life-changing, life-limiting, and life-threatening conditions are hard to deal with. don’t negate or invalidate someone else’s experience or challenge. someone can always have it better than you and someone always can have it worse.
Stories like this make you appreciate your children that were born perfectly healthy, even more. My heart breaks for children born with these rare disorders….or any disorder.
Isn’t that the truth! You worry so much about the little things with your healthy kids but there are parents dealing with this type of illness. So easy to take it for granted.
There is no such thing as _"perfectly healthy."_ We are almost all born with silent/hidden predispositions at birth for which are ticking away throughout our lives. You will not know if your child is actually "healthy" until they are adults - a lot of disorders and diseases manifest later in adolescence, early adulthood or even a bit later (but still early in life). The majority of autism diagnosis for example come later in development, and learning disabilities, Parkinson's, motor tick syndromes, cardiovascular disorders, bone/muscle/tissue developmental issues, neurological/brain developmental disorders, early-onset dementia, schizophrenia, BPD, Bipolar, psychopathy, childhood blood cancers and many other things might not appear until much later. 'Obvious' disabilities or mutations at birth are what you are _really_ speaking about. Sadly, there is no crystal ball that predicts a healthy development and life for your child just because they come-out at a good weight and will all their fingers and toes. DNA can be a time-bomb, and it is insensitive to the age of those it effects. And every single day of the week children, teens and young adults die of things their parents never would have thought would happen to _their_ child. None of us get out of this life alive, and you don't sign a guarantee at their birth that they get to live as long as mom & dad or grandma & grandpa. Best to be grateful while you have them, and always be prepared for the inevitable in life - for which we cannot control. I know this myself from early loses of people that should not have passed, and health issues I was never supposed to get, and that no one thought was coming. Life's cruel, and you don't want to get complacent and take your current good fortune for granted as something that will inventively continue like a promise from the universe. The worse part about it all when you do that, is how loss and illness typically happens... which is to say, that loss and illness tends to strike when we least expect it and when we are not ready. And you don't stop being a parent when they are grown - so you have a long life (hopefully) to experience things you never expected in your child's journey. No parent expects to loose a son or daughter afterall (even when they are grown). Remember this, and appreciate every day things are quiet and calm - instead of appreciating the illusion of 'perfect health'. It will set you up for being blind-sided when things inevitably feel less perfect in the future. Lose and illness is a inevitable state of existence that you will not escape, and if you have kids that is on the table for them too. Some of the longest lived people I have ever known are people who grew up with disabilities from birth and had piles of things wrong with them. I can also count on two hands the health nuts I have known in my life, who are gone too soon from bad choices, accidents and underlying health issues they were not aware of. Where as my friend lost his "perfectly healthy," big, strong and strapping 4-year-old son, one evening while staying the night with his grandma. He had a freak allergic reaction to cat dander in couch and went from playing on the couch with his toys, to asphyxiating in her arms over the course of about 10 minutes and being passed before the ambulance got there. They dropped their 'healthy' son off at grandmas at 5pm in the evening to go out and watch a movie... and a few hours later are dealing with never seeing him again (and planning a funeral).... and two days later are burying him just shy of Christmas week. Life is weird like that.
@@Alice-fo2jf Considering that Rebecca had, according to her mom, eaten cat shit from the litter box, I don't think a mustard/onion sandwich would faze someone with PWS 💀
I am a mother and I would ask the doctors to end the suffering of my child, if possible. And I know that most people would jump on me for what I am saying. As if I would claim this is not a person worth loving and living. But in my eyes this is not a life. Not, if you eat yourself to death. What is the point to watch my beloved baby grow up and die anyway way before me? At least she was alive? Was THIS a life for her? Or was she doomed to suffer her whole life.....
This is so sad, Katie seems so sweet. My mum worked as a teachers aide at a special needs school, one of the kids had PWS and ate a goldfish out of a fishbowl in the school office. Really sad.
@@ravenbaa7989 It's a disability. It drastically limits how a person can live their life and makes them completely dependent on help to not die from it.
I haven’t read any negative comments about this girl. Anyone that would or has is an insensitive *+$!*-%! . Until a person is touched emotionally by an individual with a handicap or devastating disability, you just don’t know how precious these people are. But I haven’t read any hurtful comments here, unless I’m mistaken.
I knew a family with a son with PWS. They were poor and he had been born in a village in Mexico and the family got a late diagnosis which they really didn’t understand. When I met him he was in 3rd grade and weighed 258 pounds. He died at age 12 when he got into their garage, drank a whole gallon of antifreeze, vomited and aspirated. A true tragedy.
I heard about Katie several years ago. She's so well-meaning, has hopes and dreams, but is at the mercy of this horrible disease. I pray she gets the help she needs and is able to live some of her dreams. 💕
I worked for Catherine (Katie) she is an inspirational human being, courageous, smart, caring, kind and lived her life to the fullest, she chose to live her life her way supported fully by her heroic parents who supported her from the day she was born until the moment she passed away peacefully August 22
You were blessed to have known her. I’m sure you returned her kindness and did what you could to be a fine employee and offer personal support. May her soul rest in peace. 🤍
My parents adopted a child with this disorder. If she hadn’t been raised in a normal family, this disorder would have taken her life over. She didn’t have the issues Katie had, but she had significant health issues just the same. It’s a very sad disorder, and very hard for families. These individuals, will do anything for food, break into other people’s houses, and never stop eating. ☹️☹️☹️
That was amazing for your patties to adopt someone with this disorder it can’t have been easy but your amazing parents gave a child a chance of a normal life whatever that may bring no one’s life is perfect by any means,I believe God sends these angels to earth to teach us life lessons count your blessings not moaning over what you don’t have material things don’t matter it’s your health that matters ❤❤
@@Loumains Thank you for your kind comments. They were tough, no nonsense people, whom when they said something you listened. They were foster parents, who had 50 newborns come through our house in 6 years. In the early 70’s children weren’t “adoptable”, unless they were deemed “perfect”. My parents adopted two babies in 6 years, the second baby who came to them, and the last one, neither of them was ever going to be “perfect enough” to adopt. The first baby they adopted had significant heart issues, and was never going to be “perfect” enough to adopt. The last child had Prader Willy, and at first was so lethargic that picking her up was like picking up a tea cloth, no muscle tone whatsoever. She never cried, and the doctors did not expect her to live past 6 months. Well, by that time, they knew she was going to live longer, they had already bonded with her, as had us kids. She gradually got more muscle strength, and although she had many health and cognitive issues, one of the behaviours she did not display was the constant need to eat. Maybe it was being raised as part of a large Catholic family, or what, but she never displayed that need. She did lose weight very slowly, and was somewhat overweight; but not huge, she did better with it than most. My mother was a formidable woman, and when the kitchen was closed, the kitchen was closed to all of us. lol I’m not even sure if in the early 70’s there was a name for it, but as life went along, they did tell us “what was wrong”. She lived into her early 30’s but what took her life, was the curvature in her spine, that despite multiple medical interventions, they never could successfully correct. Sadly. ❤️❤️❤️
@@melanytodd2929 thank you Melanie. My parents had 5 kids of their own, when I was born, my older siblings were 9, 10, & 11 years old. My mum had 3 nearly full term miscarriages between my brother 9 years older and me. She had my little brother 18 months after I was born. I’m sure, my mum, being a good Catholic, would have welcomed more kids, but her doctor, said “NO!” to that idea, after my brother was born. So, when I was about 08 years old my parents started fostering. Babies would come sometimes in multiples, sometimes they’d be with us awhile, sometimes, just a few days. My adopted sister was second, she came and stayed, so we often had her, and two others. I certainly knew how to look after babies lol. In addition, my dad worked at the largest institution for individuals with developmental disabilities. In fact, at one point or another all of my family (except my little brother) worked there. When I started it was at the very end of “forced sterilizations,” and the drive had begun to stop taking new admissions, and look to communities to have these individuals live in group homes, in the community. I outlasted every member of my family combined, and worked there x 27 years. I left to pursue my Masters degree in the USA, where I then began working with the mentally ill, homeless individuals using drug/alcohol to relieve their symptoms. So I’ve seen all kinds of individuals with all kinds of disabilities. lol even in retirement I’ve had job offers to come back to work. Have a blessed day. ❤️
I suffer from an esophageal issue that has taken away my ability to eat. I haven't had food in 10 months and I am constantly hungry. This past 10 months has been hell. I absolutely cannot fathom feeling this way for my entire life. My heart breaks for them.
I am so sorry you are going thru that.I was IV fed for 10 months. So hungry..even tho I was getting nutrition. I pray you get what you need to live a full life again. HUGS
I was born with a very small mouth , and both side of my family basically had sand for teeth ( just very fragile weak teeth ) I started losing teeth right when I grew them both sets . Being poor and neglected, my teeth started falling out one by one , at 16 I had went to a free dentist because my tooth had got so bad I had to remove it . I had already lost the whole right side of my teeth by then and the dentist said I’ll need dentures before I hit 20. In 30 now , and still saving up to get dents to put in, it’s hard when you live paycheck to paycheck with bills . I’m so depressed because of the shape my teeth are in, but I’m trying. Eating is so difficult to me , it’s like a chore it hurts and is so painful during chewing , my jaw pops and creaks randomly all day , I don’t look forward to eating unless it is smoothies or icecream . I live off ensure . I have a terrifying fear of choking and deal with it every time I eat food. I wish I could afford implants or even dentures that I’m trying to save up for it
@@oldwomanrantingShe gained even more since this one and had to be on oxygen due to her weight making it harder for her to breathe and died as a result from both
I was born with sickle cell. Very painful and I have been asked to euthanize three times. But my mother always taught me that there is always somebody worse off than you. I’m 42. I have six children and I advocate for my illness. I praise God that I barely get sick like my older brother who passed away 12 years ago and when I watch stuff like this, I have so much sadness for people dealing with something worse than I am.
As a social worker I gained some knowledge of PWS but this condition is very rare and most professionals lack knowledge of it. Its about time that we get more education and insight to help us support clients and their families
I live in Oklahoma, USA. Years ago back in 1998-2000 I lived next door to a house that had 4 people with PWS living there. 2 caregivers were always there and locks on all food pantries and refrigerator. The people were really nice but it was sad that all they thought about was eating. 😢😭
Very interesting. Back in the 1970s I had a roommate with a child (maybe 4 years old?) who was constantly ravenous. She would get up in the middle of the night foraging for food, and would even eat uncooked rice if that was all she could find. At the time I thought it was psychological, but looking back I suspect it was Prader Willi. I don’t know if the syndrome was well known then.
I have a Masters Degree in Biological Food Science and a Bachelors in Dietetics and Nutrition. I wrote my Masters Thesis on Prader Willi. I met a young man in North New York State that was born with PWS. He was 17 when got into his family’s fridge while they were not home and ate every single thing in it rupturing his stomach and passing away. PWS is my idea of pure hell. These poor children break my heart. I pray for a cure or better treatment for PWS.
Do you think there could be some treatment, in the future, like gene therapy or something? I've always felt so sad for these kids, because I don't have PWS but when I was a kid I once went for a month with nothing to eat but water and hunger is hellish even if only for a month, I can't even imagine living with ravenous hunger all one's life. 😢 I eventually got obese for a few years and I know it was overcompensation from trauma. But the frenetic desire to eat had physical limits with me, my stomach hurt when I ate too much at once, they just don't have that at all. Such a cruel disease 💔
@@zxyatiywariii8 I have no hope at all for any treatments for PWS. The only think I can hope for is we can identify what happens that causes the chromosomal deformation and maybe be able to identify it in time to terminate pregnancy where it is a factor. Unfortunately just like Down Syndrome this is a chromosomal issue so no treatment could be developed to significantly add any quality of life for these poor children.
@@omaimahegazy0158 I’m gonna be honest I don’t know enough about how crisper works and whether or not it could fix the damage to the glands in the brain. Bc from what little I have heard on crisper it doesn’t sound like it would be able to fix anything but I really don’t know
unfortunately genetic diseases are much harder to treat, it’s a bit like down syndrome in this case, because it’s about chromosomes, and set of those is completely damaged… it’s tough
@@ivebel3966 my grandson was born with a GD five years ago, it has been an uphill battle, the doctors know very little about his. We did genetic testing to see which branch of the family it comes from. The result was shocking, we were not prepared for this.
I worked with two students with this condition, not easy at all. At the residence locks had to be put on the fridge. It is a constant urge to eat. One dayI was teaching the students how to make scones and the PWS students had eaten the raw dough in seconds. So sad.
I work in a group home and I am shocked that Katie is getting her own food at the cafeteria and grocery shopping. This is an absolute no-no! All food is prepared and plated by staff and we avoid going into grocery stores the stress and temptation is too much. We have to lock up garbage, even raw meat and used coffee grinds left in the coffee maker have been eaten if left accessible. To save Katie’s life she needs to be in a controlled environment with a 900 a day calorie plan
I used to support people with autism that also had this syndrome. Some used to eat things that are not edible, support workers would have to be on alert to try and prevent individuals trying to grab dirt, leaves and other things. Gates would be put up around the kitchen to prevent them from trying to grab food while staff was cooking them dinner as it wasn't safe in case they put their hands in boiling water or grabbed food that had bones in before we had a chance to plate up their meals. Going out into the community we'd have to try to prevent the individuals we supported to not grab food off of strangers plates or grab things out of gift shops when visiting theme parks and other tourist attractions.
Me too I worked in a group home and one service use would eat the contents of the loo when he'd been.... he would eat anything on the floor... discarded ciggy butt's, mud, everything... he had a ruptured tummy and when they operated there was 9lb of unedible items in his stomach.... he passed couple days after surgery due to complications.
I saw an older doc she was in from years ago. Hope she's doing ok The worst bit of the disease is they need less cals per day than the average person. So it must feel like a losing battle
She is not cognizant enough to understand that and even if she could, it’s not a choice she has. Disabled people are human beings. The urge to nurture and rear children is present in them regardless of their disorder. It doesn’t have to make sense to you
So hard because people just think greedy but imagine your brain pretending it is so thirsty drink and needing to drink even though you have drank a pool full so sad
I have always had a binge eating disorder which stretched my stomach, now I’m trying to eat less but I’m always hungry and it sux….i couldn’t imagine having this disease!!
I had a 4 year old little girl in my preschool class I taught with WPS. I knew nothing about it until she came into my life. I felt so bad about not giving her extra food at breakfast and lunch and knowing she truly felt ravished. I had to remove the trash bag immediately after meal/snack times, keep chalk and play dough up high. I even had to lock up the fish food and meal worms for our lizards. There was nothing she wouldn’t try to eat. When she needed to use the bathroom , someone would have to go with her because we had a baby room and she was quick to snatch up formula/ breast milk bottles.
I've already seen this family in another English documentary. Katie was younger at the time. So v v sad. Her parents are really good. Must be terrible to cope and help her.
Glad for these young people and the help they are getting in the UK but in reality our social services have been cut to the bone through conservative austerity cuts. It is usually a two week waiting list to get an appointment with a doctor.
That sister is so lovely! I know she’s always known she easily could have been the one with the genetic defect instead of her sister. Can’t imagine what torture. The son who wanted to die is in peace I pray.
Germany has a great model too, the group facilities. They even managed to keep a healthy weight. Of course you'd have to ask PW folks themselves how they feel about it, but what I've seen the residents seemed pretty happy. I think if more people were aware of this we would have no trouble getting resources in place. Few people learn of this condition and don't feel compassion for those affected. ❤️
Aus does have live in homes who care for Prader- Willi clients under the NDIS. 24/7 shifts and respite care is well funded. Funding depends on how your doctor has organised your paperwork in conjunction with NFP health networks and large care companies. I've cared for clients with this syndrome, it's extremely challenging especially as it doesn't appear alone, there are other disorders that seem to run combinant with this chromosomal anomaly. Really feel for these people and their carers, they need to have access to the support and carer respite that are available.
Not Prader Willi, but many people taking some of the antipsychotic medications tell me they are constantly hungry and never feel full enough. They feel it as a constant battle as well.
Yup and if you pay attention to the thin or average sized criminals who end up on antipsychotics in jail, they all get husky or large.. I really feel like Depakote caused me to develop type 2 diabetes when I was a kid. Antipsychotics can cause diabetes and you can google it... :/
I also take antipsychotics. Together with an antidepressant which is also an appetite supressant. It takes away the appetite completely. And I managed to loose a lot of weight. I am surprised how people with pws don't get these meds. Or maybe it doesn't work for them.
It's a deletion of chromosome 15 which leads them to constantly feel starving. And they seek out food constantly. They may have learning delays or difficulties but they are highly intelligent and can be quite manipulative to get the food they desire. But with good guidance and relationships with carers they can live very full lives. They just need to have good meals and a structured routine around food. All good must be locked away for their own safety. They should be encouraged to keep up excerise and be rewarded with a low calorie treat. There is ways to manage it but they have to be controlled and monitored to save them from doing any harm to themselves.
This is my life story. Since my earliest memories. Absolutely controlled by food. I always knew it wasn't normal. My friends would engage in activities where I was thinking about food. Weighing me down. Both mentally and physically. So hard
This breaks my heart just seeing these beautiful humans who battle with this disorder,and I see comments on Katie prices sons social media and the comments people make some are disgusting,these wonderful people can’t help It 😢❤❤❤❤❤
Katie died in 2022, according to a comment on the documentary she was appeared in 2004 they said she gained even more weight and had to use an oxygen tank as her breathing was bad.
Sadly, most cases of PWS are not inherited. It's usually caused by a random error with the parents' gametes that happens during the division of those cells, like with other chromosomal issues.
The first time I ever heard of a disorder almost like this was in the story of Terrare (not certain of the spelling). He lived during the 18th century, and could never stop eating.
Yes, but he was also very slim, which means he must have had a variety of other disorders as well. Doctors speculate he probably had hyperthyroidism and a parasitic infection at the very least.
I worked at a group home for 4 young adults with Prader-Willie in Compton, CA. Two turned tricks for fast food, in the night while staff slept! We had to check under their mattresses each day and every night to confiscate Sweet-n-Low packets that they took from a coffee shop even.
Is Semaglutide (ozempic, wegovy, trulicity, ect.) a possiblity to feel full for these patients ? Maybe this could be a group of people those drugs could legitimately help.
I knew a lady who dealt with this. She came into my bookshop and ate every cookie I had out for customers. The next several days she came and did that. I had to stop leaving them out. Later on, my boyfriend got a job looking after her and 3 other ladies in a group home. One of the ladies had had a big 3.5 pound can of mixed nuts bought for her to help with her digestion. She had a handful each day. This other lady raided it one night and ate the whole entire can. All the cupboards had to be locked. She just couldn't help herself.
Poor darling. This is clearly an absolutely horrendous condition! Imagine being constantly ravenous with no biological satiety mechanisms. My heart goes out to all people and families dealing with this cruel condition.
My niece has this. Very devastating illness, especially since the weight gain is practically unavoidable. Her parents are very strict and careful, but due to her very slow metabolism, none of it matters.
I can't imagine how this must be for the people and the ones who care for them, with this disorder. To never feel full, just hunger all the time, that must be terrible. I'm just the opposite, I never feel hunger or thirst I have to set reminders to drink every hour or so, and reminders to eat.
I’m not a medical professional so this comment should be taken with a grain of salt. The Tirzepatide GLP-1s, Mounjaro and Zepbound (I’ve taken both overtime, never at the same time to be clear) end the “food noise” and binge eating for me. They literally turn the obsessive thoughts about food off like a light switch. I don’t have the disorder that is the topic of this video (again for clarity) but I wondered if doctors who are experts on this disorder have considered that.
The problem is not with her metabolism, the problem is with the brain. No amount of any anti-diabetic drug will help because the main issue is not addressed
No this is a brain malfunction. The full chromosome for their brain is missing or damaged. Doesn’t matter what they take. It’s not going to change what’s biologically missing it’s genetic.
I remember when I was 19 I got my wisdom teeth removed and I hard to drain the hole with syringes and the needle would press on the nerves and the pain so intense I stopped eating, those weeks where I wouldn't eat was horrific, I couldn't imagine living with a condition where you are always starving.
10:59, I can't imagine her pain, the most devastating thing for a parent is too have a child pass away before them, but I can respect her choice to let him go, what life did he have to live? Now he and his dad are together and his pain is over. Brave woman, I hope she's doing okay
So the UK has whole facilities for PWS patients and whats here in the US for them? Nothing. Our medical industry just lets them suffer. So completely shameful.
No because this is genetic. The brain feels hungry all the time like they said. They won’t get that full sensation no matter what they take. They have a damaged chromosome.
I feel bad that she can’t have kids, but being obsessed with food wouldn’t allow her to have much time for anything else like taking care of the infant 😢so sad
I have a friend with prader willi. He gained a lot of weight along with health problems and also ended up having some psychological problems as well. He is such a nice kid. Its very very sad.
I have seen Katie and her wonderful parents in another documentary about this terrible disorder. There was mention of a possible treatment / cure using growth hormones but I think these had to be administered when the person is still very young in order to be effective. So sorry for Zoe dealing with the sad loss of her son, James. Thanks to those appearing in this program and sharing their stories with us.
I just watched an episode of "My 600 pound life" and amazingly these PWS people who have a medical condition causing them to eat like addicts yet they still weigh considerably less!? The parents and caretakers are amazing people! And once again the British rule the day!
I was on such a high dose of prednisone for a while that I understand how horrible this must be. I could not stop eating. Dear God please help her and anyone with this disorder.❤
I know a lady who had twin grandchildren, a boy & girl. The boy had Prader- Willi syndrome. He also has severe developmental issues. The girl is normal. Poor families!
My sister cares for a woman woth this syndrome. She is 38 years old!! I didn't know that the food aspect was a part of this syndrome, as her parents are very strict about, and controls what she eats, have a lock on her refrigerator, and she is always hungry as well. I honestly thought my sister was just being kind of mean when she tells her no most of the time. I'm glad I saw this show, as I now understand a little more about her condition.
Has anyone here ever seen the older documentary that featured not only Katie and Rebecca, but also the Indian man with PWS? I was extremely worried for his family because of how constantly enraged and physically violent he was with his mother, father and little sister. He also seemed quite powerful so any snap decisions made out of anger could EASILY maim or even kill someone. I hella wonder how they are all doing in 2024
My cousin has this illness an due to it he cant come to the family backyard cookouts. It's so heartbreaking but as a kid right before we got a solid diagnosis, but in ten min he had snuck two tubes of cookie dough, half a watermelon, four bags of chips an a whole bottle of ranch dressing and locked himself in the bathroom in a blink. By time we got in he all but polished it off, *even the the ranch dressing that he flat out drank.* Since then he can't come to most potlucks cook outs and parties. It's a downright cruel disorder to have, an that from someone with CRPS.
Some of these comments are downright ridiculous 😂 do people not listen to the video?God won’t help them. Past life regression won’t either Or appreciate suppressants. It’s a cruel disease and the only way to survive is to live hungry your entire life.
Strange really I've worked in psych for many years an this wasn't a issue back then ? Actually we had so much of the opposite refusing to eat purging they're food water toxicity but this must be or have been very rare ? 🧐 Idk
So many parents are blamed for their child's obesity. When all they needed was someone to give them a diagnosis and help. Its not a well known disease so it gets overlooked
Unfortunately Katie died in 2022, apparently towards the end her weight ballooned so much that she relied on 24/7 oxygen, I feel so bad for her family
I knew she'd died, but where did you find that info about her weight getting so bad?
I mean to be fair even without hearing official info it wouldn't be a surprise if that did happen sadly.
She was already almost 300 pounds when this was filmed, no cure as far as I know, was active in a normal way but not to the point where she was burning more calories then she was taking in, she had moments where she was on her own so no one could keep track of how much or what she was eating, and other then forcibly holding her back from eating and keeping her locked up 24/7 365 there wasn't much that could be done. I'm not sure when this documentary was filmed or when she sadly passed but eating a lot combined with not being super active can put on the pounds really quickly and age doesn't play a role then if you get to the point where your weight is making being active period hard it'll get even worse (i've heard of a few people from the fat positivity community who sadly passed away due to complications from it who were only aged early 20's to early 30's I think one was even in her late teens maybe 19 or so who were already on oxygen before they passed).
Really sad 😕
Ugh she was the worst on the show
@@iTsEfFiNsTePhhon the show she was one of the worst people on the show well and the 23 year old as well
@@iTsEfFiNsTePhhthe documentary was filmed in 2016
My new baby boy has been diagnosed with this and it's devastating. The hunger aspect is terrible enough, but there are so many more terrible symptoms as well. I just want him to have a happy fulfilling life and I don't know if that will be possible 😢
I'm so sorry, I wish your baby boy a long healthy life , My heart with you, life isn't fear, wish you all the best
So sorry to hear this❤
They have experimental drug therapies now that can help toddlers with the muscle weakness that accompanies PWS.
Sending love and blessings to you and your baby boy ❤
Never give up and fill his heart with love❣️
First time I've heard of this was from a high school assembly presented by a student with this disease. He was very large and probably bullied, but he still gave his presentation to the whole school. He was very brave and I hope he is doing well.
“It’s like asking someone to stop breathing.”
My heart aches.
To much food and oxygen are to totally different things. Her parents should have been as lit more careful. Bless them
This is a cruel disease. The first time I heard of it was in the 80s. A friend babysat a young teen who would fight you to get to food. All food was locked up. Imagine being hungry all the time. Sad.
I agree, the disease is cruel. Diabolical, almost. Like it was deliberately designed to cause within someone an unstoppable and gluttonous desire for food to the detriment of their own life.
Yes, it's purely scientific. But still. There is something very, very wrong with this condition. So much so that, to me, it's unlike other genetic disorders that I'm familiar with.
Teenagers don't need babysitters lol
@@riverrhodes7394”SOME” most definitely do I can assure you that
@@riverrhodes7394ones with genetic mutations that cause developmental delays do. What a foolish thing to say
@@riverrhodes7394 A teenager with PWS does need a babysitter
I can't imagine what a nightmare this condition would be - both for the person suffering from it, and for their parents.
There’s a worse one that you can’t sleep
-i have crazy chronic insomnia ...-
that’s not it. try fatal familial insomnia. ps, it’s not a competition for who has the worse disorder. although i will say the mental challenges associated with prader-willi can perhaps lessen the impact of suffering in a way that is disturbed more in ffi due to the lack of sleep literally driving you insane and demented prior to actually killing you, which prader-willi does not necessarily do. but honestly. not a competition and all life-changing, life-limiting, and life-threatening conditions are hard to deal with. don’t negate or invalidate someone else’s experience or challenge. someone can always have it better than you and someone always can have it worse.
Yeah me I been bullied my whole life and I’m still a teenager
Stories like this make you appreciate your children that were born perfectly healthy, even more. My heart breaks for children born with these rare disorders….or any disorder.
Isn’t that the truth! You worry so much about the little things with your healthy kids but there are parents dealing with this type of illness. So easy to take it for granted.
I wonder if she has tried a raw onion and mustard sandwich on rye bread.
There is no such thing as _"perfectly healthy."_ We are almost all born with silent/hidden predispositions at birth for which are ticking away throughout our lives. You will not know if your child is actually "healthy" until they are adults - a lot of disorders and diseases manifest later in adolescence, early adulthood or even a bit later (but still early in life).
The majority of autism diagnosis for example come later in development, and learning disabilities, Parkinson's, motor tick syndromes, cardiovascular disorders, bone/muscle/tissue developmental issues, neurological/brain developmental disorders, early-onset dementia, schizophrenia, BPD, Bipolar, psychopathy, childhood blood cancers and many other things might not appear until much later.
'Obvious' disabilities or mutations at birth are what you are _really_ speaking about. Sadly, there is no crystal ball that predicts a healthy development and life for your child just because they come-out at a good weight and will all their fingers and toes. DNA can be a time-bomb, and it is insensitive to the age of those it effects. And every single day of the week children, teens and young adults die of things their parents never would have thought would happen to _their_ child.
None of us get out of this life alive, and you don't sign a guarantee at their birth that they get to live as long as mom & dad or grandma & grandpa. Best to be grateful while you have them, and always be prepared for the inevitable in life - for which we cannot control. I know this myself from early loses of people that should not have passed, and health issues I was never supposed to get, and that no one thought was coming.
Life's cruel, and you don't want to get complacent and take your current good fortune for granted as something that will inventively continue like a promise from the universe. The worse part about it all when you do that, is how loss and illness typically happens... which is to say, that loss and illness tends to strike when we least expect it and when we are not ready. And you don't stop being a parent when they are grown - so you have a long life (hopefully) to experience things you never expected in your child's journey. No parent expects to loose a son or daughter afterall (even when they are grown).
Remember this, and appreciate every day things are quiet and calm - instead of appreciating the illusion of 'perfect health'. It will set you up for being blind-sided when things inevitably feel less perfect in the future. Lose and illness is a inevitable state of existence that you will not escape, and if you have kids that is on the table for them too. Some of the longest lived people I have ever known are people who grew up with disabilities from birth and had piles of things wrong with them. I can also count on two hands the health nuts I have known in my life, who are gone too soon from bad choices, accidents and underlying health issues they were not aware of.
Where as my friend lost his "perfectly healthy," big, strong and strapping 4-year-old son, one evening while staying the night with his grandma. He had a freak allergic reaction to cat dander in couch and went from playing on the couch with his toys, to asphyxiating in her arms over the course of about 10 minutes and being passed before the ambulance got there. They dropped their 'healthy' son off at grandmas at 5pm in the evening to go out and watch a movie... and a few hours later are dealing with never seeing him again (and planning a funeral).... and two days later are burying him just shy of Christmas week.
Life is weird like that.
@@Alice-fo2jf
Considering that Rebecca had, according to her mom, eaten cat shit from the litter box, I don't think a mustard/onion sandwich would faze someone with PWS 💀
I am a mother and I would ask the doctors to end the suffering of my child, if possible. And I know that most people would jump on me for what I am saying. As if I would claim this is not a person worth loving and living.
But in my eyes this is not a life. Not, if you eat yourself to death. What is the point to watch my beloved baby grow up and die anyway way before me? At least she was alive?
Was THIS a life for her? Or was she doomed to suffer her whole life.....
Leticia feels so happy when she makes her sister proud. That’s so sweet. The mom shouldn’t feel guilty. She just wanted her son to be at peace.
This is so sad, Katie seems so sweet. My mum worked as a teachers aide at a special needs school, one of the kids had PWS and ate a goldfish out of a fishbowl in the school office. Really sad.
Katie died in 2022 due to her condition at the age of 41
@@ljmcdonald2703 Oh 😢
🙏🏼
At least she's not suffering anymore, right?
Oh my god that poor fish 😕
@@ljmcdonald2703that's so sad to hear, poor Katie she only wanted to be independent
😳💔 omg
Mayim Bailik has a foundation to study Praeder-Willi Syndrome. I would so much like to see more attention to this condition.
Incredible woman
Oh thanks, I'll look it up. She's amazing.
The genocide apologist? no thanks.
Please dont pick on people that are handicapped they are so precious and also they deserve to be loved ❤
It’s not a handicap
@@ravenbaa7989 It's a disability. It drastically limits how a person can live their life and makes them completely dependent on help to not die from it.
@@ravenbaa7989 how is it not a handicap?
You are so right. Thank you for your kind and compassionate comment
I haven’t read any negative comments about this girl. Anyone that would or has is an insensitive *+$!*-%! . Until a person is touched emotionally by an individual with a handicap or devastating disability, you just don’t know how precious these people are. But I haven’t read any hurtful comments here, unless I’m mistaken.
I knew a family with a son with PWS. They were poor and he had been born in a village in Mexico and the family got a late diagnosis which they really didn’t understand. When I met him he was in 3rd grade and weighed 258 pounds. He died at age 12 when he got into their garage, drank a whole gallon of antifreeze, vomited and aspirated. A true tragedy.
How did you know them?
“He’s back in his dads arms, that’s where he wanted to be”
I held on strong until that last bit. May her heart heal.
My nephew was born with this syndrome. His condition was worse, but he had professional help. He could not talk due to his tongue.
probably due to hypotonia
I heard about Katie several years ago. She's so well-meaning, has hopes and dreams, but is at the mercy of this horrible disease. I pray she gets the help she needs and is able to live some of her dreams. 💕
She died in September 2022 at the age of 41 due to her obesity
@@ljmcdonald2703really?! Oh no! Do you have any sources?
@@ljmcdonald2703😢 how did she put all the weight back on?!
@@ljmcdonald2703how do you know?
@@Itwasalladream1987 She never lost it to begin with.
I worked for Catherine (Katie) she is an inspirational human being, courageous, smart, caring, kind and lived her life to the fullest, she chose to live her life her way supported fully by her heroic parents who supported her from the day she was born until the moment she passed away peacefully August 22
That's really sad
Well, she's at peace❤ and she was so very loved while here.
Ohhhh no 😢
You were blessed to have known her. I’m sure you returned her kindness and did what you could to be a fine employee and offer personal support. May her soul rest in peace. 🤍
Her father died in November 2019
So sad. I learnt something new today. Very sorry for her, other people suffering, and their families
My parents adopted a child with this disorder. If she hadn’t been raised in a normal family, this disorder would have taken her life over. She didn’t have the issues Katie had, but she had significant health issues just the same. It’s a very sad disorder, and very hard for families. These individuals, will do anything for food, break into other people’s houses, and never stop eating. ☹️☹️☹️
That was amazing for your patties to adopt someone with this disorder it can’t have been easy but your amazing parents gave a child a chance of a normal life whatever that may bring no one’s life is perfect by any means,I believe God sends these angels to earth to teach us life lessons count your blessings not moaning over what you don’t have material things don’t matter it’s your health that matters ❤❤
@@Loumains Thank you for your kind comments. They were tough, no nonsense people, whom when they said something you listened. They were foster parents, who had 50 newborns come through our house in 6 years. In the early 70’s children weren’t “adoptable”, unless they were deemed “perfect”. My parents adopted two babies in 6 years, the second baby who came to them, and the last one, neither of them was ever going to be “perfect enough” to adopt. The first baby they adopted had significant heart issues, and was never going to be “perfect” enough to adopt. The last child had Prader Willy, and at first was so lethargic that picking her up was like picking up a tea cloth, no muscle tone whatsoever. She never cried, and the doctors did not expect her to live past 6 months. Well, by that time, they knew she was going to live longer, they had already bonded with her, as had us kids. She gradually got more muscle strength, and although she had many health and cognitive issues, one of the behaviours she did not display was the constant need to eat. Maybe it was being raised as part of a large Catholic family, or what, but she never displayed that need. She did lose weight very slowly, and was somewhat overweight; but not huge, she did better with it than most. My mother was a formidable woman, and when the kitchen was closed, the kitchen was closed to all of us. lol I’m not even sure if in the early 70’s there was a name for it, but as life went along, they did tell us “what was wrong”. She lived into her early 30’s but what took her life, was the curvature in her spine, that despite multiple medical interventions, they never could successfully correct. Sadly. ❤️❤️❤️
@@Bella-gj6wc❤❤❤
@@melanytodd2929 thank you Melanie. My parents had 5 kids of their own, when I was born, my older siblings were 9, 10, & 11 years old. My mum had 3 nearly full term miscarriages between my brother 9 years older and me. She had my little brother 18 months after I was born. I’m sure, my mum, being a good Catholic, would have welcomed more kids, but her doctor, said “NO!” to that idea, after my brother was born. So, when I was about 08 years old my parents started fostering. Babies would come sometimes in multiples, sometimes they’d be with us awhile, sometimes, just a few days. My adopted sister was second, she came and stayed, so we often had her, and two others. I certainly knew how to look after babies lol. In addition, my dad worked at the largest institution for individuals with developmental disabilities. In fact, at one point or another all of my family (except my little brother) worked there. When I started it was at the very end of “forced sterilizations,” and the drive had begun to stop taking new admissions, and look to communities to have these individuals live in group homes, in the community. I outlasted every member of my family combined, and worked there x 27 years. I left to pursue my Masters degree in the USA, where I then began working with the mentally ill, homeless individuals using drug/alcohol to relieve their symptoms. So I’ve seen all kinds of individuals with all kinds of disabilities. lol even in retirement I’ve had job offers to come back to work. Have a blessed day. ❤️
@@Bella-gj6wcyou're SO special ❣ loads of love from South Africa 🇿🇦 ❤
Such a cruel disease. Imagine being constantly hungry and never satisfied. Truly sad.
Seriously imagine what it would be like to feel hungry all the time!! Maddening. It must be horrible. And so worrisome for the parents.
I suffer from an esophageal issue that has taken away my ability to eat. I haven't had food in 10 months and I am constantly hungry. This past 10 months has been hell. I absolutely cannot fathom feeling this way for my entire life.
My heart breaks for them.
I am so sorry you are going thru that.I was IV fed for 10 months. So hungry..even tho I was getting nutrition.
I pray you get what you need to live a full life again.
HUGS
Same for me, I have barretts disease, constant endoscopies to burn out the barretts, I'm 5'4 and 97 lbs. I want to eat but cannot eat alot.
I was born with a very small mouth , and both side of my family basically had sand for teeth ( just very fragile weak teeth ) I started losing teeth right when I grew them both sets . Being poor and neglected, my teeth started falling out one by one , at 16 I had went to a free dentist because my tooth had got so bad I had to remove it . I had already lost the whole right side of my teeth by then and the dentist said I’ll need dentures before I hit 20. In 30 now , and still saving up to get dents to put in, it’s hard when you live paycheck to paycheck with bills . I’m so depressed because of the shape my teeth are in, but I’m trying. Eating is so difficult to me , it’s like a chore it hurts and is so painful during chewing , my jaw pops and creaks randomly all day , I don’t look forward to eating unless it is smoothies or icecream . I live off ensure . I have a terrifying fear of choking and deal with it every time I eat food. I wish I could afford implants or even dentures that I’m trying to save up for it
@@4ever9zxyme I wish you all the best❤
@@Orangebegonia Courtesy of my iv diet I'm down 150lbs in 11 months. Granted I needed to lose it, but not by malnutrition. It's horrible.
I remember seeing her in a previous documentary cooking mounds of vegetables. It's really sad as she tries so hard to control her temptation to eat.
Yeah I saw that one too and I was shocked by how much weight she had gained by the filming of this vid.
@@oldwomanrantingShe gained even more since this one and had to be on oxygen due to her weight making it harder for her to breathe and died as a result from both
I was born with sickle cell. Very painful and I have been asked to euthanize three times. But my mother always taught me that there is always somebody worse off than you. I’m 42. I have six children and I advocate for my illness. I praise God that I barely get sick like my older brother who passed away 12 years ago and when I watch stuff like this, I have so much sadness for people dealing with something worse than I am.
As a social worker I gained some knowledge of PWS but this condition is very rare and most professionals lack knowledge of it. Its about time that we get more education and insight to help us support clients and their families
Leticia and her sister had me tearing up, beautiful ladies❤
💯 💯 💯
I live in Oklahoma, USA.
Years ago back in 1998-2000 I lived next door to a house that had 4 people with PWS living there. 2 caregivers were always there and locks on all food pantries and refrigerator. The people were really nice but it was sad that all they thought about was eating. 😢😭
Very interesting. Back in the 1970s I had a roommate with a child (maybe 4 years old?) who was constantly ravenous. She would get up in the middle of the night foraging for food, and would even eat uncooked rice if that was all she could find. At the time I thought it was psychological, but looking back I suspect it was Prader Willi. I don’t know if the syndrome was well known then.
It was identified in the 1950's.
Pica
@@ljmcdonald2703 if they did not eat anything inedible (like metallic objects etc) it is not pica
This must be a devastating diagnosis for parents to get. It's got to be one of the worst of the non-terminal diagnoses. Heartbreaking.
I have a Masters Degree in Biological Food Science and a Bachelors in Dietetics and Nutrition. I wrote my Masters Thesis on Prader Willi. I met a young man in North New York State that was born with PWS. He was 17 when got into his family’s fridge while they were not home and ate every single thing in it rupturing his stomach and passing away. PWS is my idea of pure hell. These poor children break my heart. I pray for a cure or better treatment for PWS.
Do you think there could be some treatment, in the future, like gene therapy or something?
I've always felt so sad for these kids, because I don't have PWS but when I was a kid I once went for a month with nothing to eat but water and hunger is hellish even if only for a month, I can't even imagine living with ravenous hunger all one's life. 😢
I eventually got obese for a few years and I know it was overcompensation from trauma. But the frenetic desire to eat had physical limits with me, my stomach hurt when I ate too much at once, they just don't have that at all. Such a cruel disease 💔
@@zxyatiywariii8 I have no hope at all for any treatments for PWS. The only think I can hope for is we can identify what happens that causes the chromosomal deformation and maybe be able to identify it in time to terminate pregnancy where it is a factor. Unfortunately just like Down Syndrome this is a chromosomal issue so no treatment could be developed to significantly add any quality of life for these poor children.
@@Wodenseyesnot even crisper can make a difference ?
@@omaimahegazy0158 I’m gonna be honest I don’t know enough about how crisper works and whether or not it could fix the damage to the glands in the brain. Bc from what little I have heard on crisper it doesn’t sound like it would be able to fix anything but I really don’t know
With so many medical advances these days I’m shocked there is nothing to help with this issue
I'd want to try hypnosis.
unfortunately genetic diseases are much harder to treat, it’s a bit like down syndrome in this case, because it’s about chromosomes, and set of those is completely damaged… it’s tough
@@ivebel3966 my grandson was born with a GD five years ago, it has been an uphill battle, the doctors know very little about his. We did genetic testing to see which branch of the family it comes from. The result was shocking, we were not prepared for this.
They’re treating it with Mounjaro in my country, apparently it works (a bit)
Successful rapid weight reduction and the use of liraglutide for morbid obesity in adolescent Prader-Willi syndrome - study -
I worked with two students with this condition, not easy at all. At the residence locks had to be put on the fridge. It is a constant urge to eat. One dayI was teaching the students how to make scones and the PWS students had eaten the raw dough in seconds. So sad.
I work in a group home and I am shocked that Katie is getting her own food at the cafeteria and grocery shopping. This is an absolute no-no! All food is prepared and plated by staff and we avoid going into grocery stores the stress and temptation is too much. We have to lock up garbage, even raw meat and used coffee grinds left in the coffee maker have been eaten if left accessible.
To save Katie’s life she needs to be in a controlled environment with a 900 a day calorie plan
@@moseschruteshe already passed in 2022.
The australian health care system has so little funding for disabled people. Its absolutely shameful.
There's just way too many people who need care. Maybe we should deal with the source.
@@billmartins5545
Deal with the source of Prader-Willi Syndrome?
NDIS, better than USA. That’s a bold statement
@@billmartins5545 what the hell are you implying
In New Zealand the government are cutting support for them and firing caregivers because they “can’t afford it”
This is so heartbreaking😥
When Leticia’s sister says, “I love her,” i nearly lost it 😢. This is so heartbreaking for everyone doing their best to get through this life 💗
I used to support people with autism that also had this syndrome. Some used to eat things that are not edible, support workers would have to be on alert to try and prevent individuals trying to grab dirt, leaves and other things. Gates would be put up around the kitchen to prevent them from trying to grab food while staff was cooking them dinner as it wasn't safe in case they put their hands in boiling water or grabbed food that had bones in before we had a chance to plate up their meals. Going out into the community we'd have to try to prevent the individuals we supported to not grab food off of strangers plates or grab things out of gift shops when visiting theme parks and other tourist attractions.
Me too I worked in a group home and one service use would eat the contents of the loo when he'd been.... he would eat anything on the floor... discarded ciggy butt's, mud, everything... he had a ruptured tummy and when they operated there was 9lb of unedible items in his stomach.... he passed couple days after surgery due to complications.
Eating non food items is called Pica
@@sunnyzengaravito4930not when it’s called Prader Willie
@adb8003 look it up
Pica,autism,and pradie Willie symptom are different diseases and conditions.
I saw an older doc she was in from years ago. Hope she's doing ok
The worst bit of the disease is they need less cals per day than the average person. So it must feel like a losing battle
Katie died in 2022 due to her obesity and breathing issues
Why would they even want her to have children and pass this disease onto them?
She is not cognizant enough to understand that and even if she could, it’s not a choice she has. Disabled people are human beings. The urge to nurture and rear children is present in them regardless of their disorder. It doesn’t have to make sense to you
So hard because people just think greedy but imagine your brain pretending it is so thirsty drink and needing to drink even though you have drank a pool full so sad
I have always had a binge eating disorder which stretched my stomach, now I’m trying to eat less but I’m always hungry and it sux….i couldn’t imagine having this disease!!
I had a 4 year old little girl in my preschool class I taught with WPS. I knew nothing about it until she came into my life. I felt so bad about not giving her extra food at breakfast and lunch and knowing she truly felt ravished. I had to remove the trash bag immediately after meal/snack times, keep chalk and play dough up high. I even had to lock up the fish food and meal worms for our lizards. There was nothing she wouldn’t try to eat. When she needed to use the bathroom , someone would have to go with her because we had a baby room and she was quick to snatch up formula/ breast milk bottles.
I've already seen this family in another English documentary. Katie was younger at the time. So v v sad. Her parents are really good. Must be terrible to cope and help her.
She died in 2022
@@ljmcdonald2703 I'm really sad to hear that. Thanks for telling me.
Good on the UK government for covering that care. Now our government needs to step up.
Glad for these young people and the help they are getting in the UK but in reality our social services have been cut to the bone through conservative austerity cuts. It is usually a two week waiting list to get an appointment with a doctor.
I had no idea of this syndrome. My heart and prayers to these families.
That sister is so lovely! I know she’s always known she easily could have been the one with the genetic defect instead of her sister. Can’t imagine what torture. The son who wanted to die is in peace I pray.
It's a shame that with the NDIS in place, there are no facilities to support these people. Surely something could be done here in Australia
Germany has a great model too, the group facilities. They even managed to keep a healthy weight. Of course you'd have to ask PW folks themselves how they feel about it, but what I've seen the residents seemed pretty happy.
I think if more people were aware of this we would have no trouble getting resources in place. Few people learn of this condition and don't feel compassion for those affected. ❤️
Ozempic med may help ! New info !
Aus does have live in homes who care for Prader- Willi clients under the NDIS. 24/7 shifts and respite care is well funded. Funding depends on how your doctor has organised your paperwork in conjunction with NFP health networks and large care companies.
I've cared for clients with this syndrome, it's extremely challenging especially as it doesn't appear alone, there are other disorders that seem to run combinant with this chromosomal anomaly. Really feel for these people and their carers, they need to have access to the support and carer respite that are available.
@@cynthiaweygandt948can’t help this is genetic. This is in their genes not a disorder.
Not Prader Willi, but many people taking some of the antipsychotic medications tell me they are constantly hungry and never feel full enough. They feel it as a constant battle as well.
I was thinking the same thing. I put on 50kg from them. I went from being too thin to obese. They made me constantly hungry. So hungry.
Yup and if you pay attention to the thin or average sized criminals who end up on antipsychotics in jail, they all get husky or large.. I really feel like Depakote caused me to develop type 2 diabetes when I was a kid. Antipsychotics can cause diabetes and you can google it... :/
I also take antipsychotics. Together with an antidepressant which is also an appetite supressant. It takes away the appetite completely. And I managed to loose a lot of weight. I am surprised how people with pws don't get these meds. Or maybe it doesn't work for them.
I’m super proud of Leticia. 🙏🏻💖
It's a deletion of chromosome 15 which leads them to constantly feel starving. And they seek out food constantly. They may have learning delays or difficulties but they are highly intelligent and can be quite manipulative to get the food they desire. But with good guidance and relationships with carers they can live very full lives. They just need to have good meals and a structured routine around food. All good must be locked away for their own safety. They should be encouraged to keep up excerise and be rewarded with a low calorie treat. There is ways to manage it but they have to be controlled and monitored to save them from doing any harm to themselves.
Really?
@@katerinathatcher7004 yes really. It's very interesting. But quite rare.
This is my life story. Since my earliest memories. Absolutely controlled by food. I always knew it wasn't normal. My friends would engage in activities where I was thinking about food. Weighing me down. Both mentally and physically. So hard
What a sweet girl, so innocent
Too heartbreaking. I can only imagine her parent's anxiety. 🙏
This breaks my heart just seeing these beautiful humans who battle with this disorder,and I see comments on Katie prices sons social media and the comments people make some are disgusting,these wonderful people can’t help
It 😢❤❤❤❤❤
Precious lady, I hope she’s okay these days ❤
Katie died in 2022, according to a comment on the documentary she was appeared in 2004 they said she gained even more weight and had to use an oxygen tank as her breathing was bad.
What an amazing wonderful facility. This is what people need who suffer from this disorder. This gives them a chance
So sad. This is why it’s critical to get genetic tests
Sadly, most cases of PWS are not inherited. It's usually caused by a random error with the parents' gametes that happens during the division of those cells, like with other chromosomal issues.
It is possible to test for in early pregnancy with a blood sample from the mother, but its expensive.
And then what? What’s that going to do? Stop it from happening? lol. It’s expensive as well. Not that easy to just get that done when pregnant
@@crohniequeenab abortion.
The idea is that if you're a carrier for a genetic disease then you just shouldn't have kids unless you can afford IVF @@crohniequeenab
The first woman seemed so sweet...she cleans for handy caped schools, and she's helping to find a cure..the second boy was....scary almost..
She is so lovely... she is in another prada wili syndrome doc a few years back. I'm glad to see she is still well.
@@persimmons5390she died 2 years ago
The younger girl in the documentary Rebecca was almost as destructive as the Indian guy
@@persimmons5390I read that she passed away 2 years ago, unfortunately
The first time I ever heard of a disorder almost like this was in the story of Terrare (not certain of the spelling). He lived during the 18th century, and could never stop eating.
Yes, but he was also very slim, which means he must have had a variety of other disorders as well. Doctors speculate he probably had hyperthyroidism and a parasitic infection at the very least.
This is beyond heartbreaking. My prayers go out to all the families. 💔🙏💜
I worked at a group home for 4 young adults with Prader-Willie in Compton, CA. Two turned tricks for fast food, in the night while staff slept! We had to check under their mattresses each day and every night to confiscate Sweet-n-Low packets that they took from a coffee shop even.
Is Semaglutide (ozempic, wegovy, trulicity, ect.) a possiblity to feel full for these patients ? Maybe this could be a group of people those drugs could legitimately help.
Probably not if it's the brain rather than stomach but some of those meds change appetite
It helps your mind too I was thinking it would help
It slows digestion and since they can’t feel pain it would probably end up blocking their stomach
Not everyone loses weight on ozempic
“I was treated like a dust bin.” Shows her sweeping.
I knew a lady who dealt with this. She came into my bookshop and ate every cookie I had out for customers. The next several days she came and did that. I had to stop leaving them out.
Later on, my boyfriend got a job looking after her and 3 other ladies in a group home. One of the ladies had had a big 3.5 pound can of mixed nuts bought for her to help with her digestion. She had a handful each day. This other lady raided it one night and ate the whole entire can. All the cupboards had to be locked. She just couldn't help herself.
Poor darling. This is clearly an absolutely horrendous condition! Imagine being constantly ravenous with no biological satiety mechanisms. My heart goes out to all people and families dealing with this cruel condition.
Such a heartless illness. I never heard of this before and I'm 72. God bless these dear ones!
My niece has this. Very devastating illness, especially since the weight gain is practically unavoidable. Her parents are very strict and careful, but due to her very slow metabolism, none of it matters.
I can't imagine how this must be for the people and the ones who care for them, with this disorder.
To never feel full, just hunger all the time, that must be terrible.
I'm just the opposite, I never feel hunger or thirst
I have to set reminders to drink every hour or so, and reminders to eat.
I have the same problem and it is hard...people call me anorexic and constantly ask me why I don't just eat more...
You don't feel hunger or thirst either? This may sound strange, but it is nice to know someone else has this.
I agree it is very hard.
@@BadgerDevil It was a shock to read your comment because you are only the second person I have ever come in contact with that has this condition
I was also shocked, I have never heard of anyone else with this.
We are rare, that's for sure.
🙂
I’m not a medical professional so this comment should be taken with a grain of salt. The Tirzepatide GLP-1s, Mounjaro and Zepbound (I’ve taken both overtime, never at the same time to be clear) end the “food noise” and binge eating for me. They literally turn the obsessive thoughts about food off like a light switch. I don’t have the disorder that is the topic of this video (again for clarity) but I wondered if doctors who are experts on this disorder have considered that.
Definitely something worth investigating.
I wonder if binge eating hunger is different than natural considerably largely hormonally directed hunger.
The problem is not with her metabolism, the problem is with the brain. No amount of any anti-diabetic drug will help because the main issue is not addressed
No this is a brain malfunction. The full chromosome for their brain is missing or damaged. Doesn’t matter what they take. It’s not going to change what’s biologically missing it’s genetic.
@@einstein9901mounjaro works on the brain. That together with Contrave could provide relief.
Aww, no way Katie. I rem watching her in another dicumentary. Im so happy shes still with us 💓
This documentary was in 2012, she died nearly 2 years ago
@ljmcdonald2703 she's still alive today? I truly hope she has people watching over her. I don't want her to die, she's so sweet.
@@rayray5662they just said she died in 2022, so no, she’s not still with us.
How awful. To live hungry every second and to struggle with weight. I feel so bad for them and their families I'm so sorry you have to live this way 😞
I remember when I was 19 I got my wisdom teeth removed and I hard to drain the hole with syringes and the needle would press on the nerves and the pain so intense I stopped eating, those weeks where I wouldn't eat was horrific, I couldn't imagine living with a condition where you are always starving.
I’m a stay at home wife and I’m so grateful my husband was able to do that for our family. ❤
Antipsychotics make similar appetite problems.
10:59, I can't imagine her pain, the most devastating thing for a parent is too have a child pass away before them, but I can respect her choice to let him go, what life did he have to live? Now he and his dad are together and his pain is over. Brave woman, I hope she's doing okay
My God! 💔 Having a baby is such a gamble .. it’s terrifying actually
So the UK has whole facilities for PWS patients and whats here in the US for them?
Nothing.
Our medical industry just lets them suffer.
So completely shameful.
Can Ozempic help these people? It works by cutting off your appetite. So maybe it could help them not feel hungry?
No because this is genetic. The brain feels hungry all the time like they said. They won’t get that full sensation no matter what they take. They have a damaged chromosome.
I think it goes a little deeper than that. Imagine the trauma from being hungry all the time for so long. That alone could cause stress eating.
Probably not. If the part of the brain that tells you to stop isn't there then Ozempic can't activate it to make you stop anyway.
I feel bad that she can’t have kids, but being obsessed with food wouldn’t allow her to have much time for anything else like taking care of the infant 😢so sad
Then the child may be another version of her.
People with Prader-Willi are infertile due to sexual immaturity, their reproductive organs don’t develop like a normal person
I have a friend with prader willi. He gained a lot of weight along with health problems and also ended up having some psychological problems as well. He is such a nice kid. Its very very sad.
This is so sad. So difficult to deal with as a person and for parents. Beyond believe!
It’s sad the mom said it’s her fault 😢 i have a sister that might have this disease
I have seen Katie and her wonderful parents in another documentary about this terrible disorder. There was mention of a possible treatment / cure using growth hormones but I think these had to be administered when the person is still very young in order to be effective. So sorry for Zoe dealing with the sad loss of her son, James. Thanks to those appearing in this program and sharing their stories with us.
I just watched an episode of "My 600 pound life" and amazingly these PWS people who have a medical condition causing them to eat like addicts yet they still weigh considerably less!? The parents and caretakers are amazing people! And once again the British rule the day!
Say what you like about the UK government. They dl care for disabled people.
There is a full documentry on this.
I love the bond between Letitia and her sister. 🩷🩷🩷
My heart stopped when the mother of the guy smile while remember the happiness of her son eating itself to death......poor mother,I feel her......
I was on such a high dose of prednisone for a while that I understand how horrible this must be. I could not stop eating. Dear God please help her and anyone with this disorder.❤
My 5y/o is currently going through the same thing due to steroids for asthma.
@@xvnsxxnz
So sorry.
BLESS YOU ALL!
I know a lady who had twin grandchildren, a boy & girl. The boy had Prader- Willi syndrome. He also has severe developmental issues. The girl is normal. Poor families!
My sister cares for a woman woth this syndrome. She is 38 years old!! I didn't know that the food aspect was a part of this syndrome, as her parents are very strict about, and controls what she eats, have a lock on her refrigerator, and she is always hungry as well. I honestly thought my sister was just being kind of mean when she tells her no most of the time. I'm glad I saw this show, as I now understand a little more about her condition.
Im so so sadfor this lovely girl xxxxxxxx
Has anyone here ever seen the older documentary that featured not only Katie and Rebecca, but also the Indian man with PWS? I was extremely worried for his family because of how constantly enraged and physically violent he was with his mother, father and little sister. He also seemed quite powerful so any snap decisions made out of anger could EASILY maim or even kill someone. I hella wonder how they are all doing in 2024
Me too suchin I think his name was. He was a jerk and he smoked and drank too.
I've seen that one too.
She should visit more than once a month
Omg the interviewer has beautiful eyes 👀
So true
So gorgous❤
Surely they could find an appetite suppressant? This is terrible
Not when it’s in their genetic dna. There is no suppressing it. It’s in the brain.
@@crohniequeenab And they can not suppress a thing they don't have.
No , they are doomed.
My parents' neighbor's son was diagnosed with this. They had to lock up everything that could possibly be consumed after he drank rubbing alcohol.
My cousin has this illness an due to it he cant come to the family backyard cookouts. It's so heartbreaking but as a kid right before we got a solid diagnosis, but in ten min he had snuck two tubes of cookie dough, half a watermelon, four bags of chips an a whole bottle of ranch dressing and locked himself in the bathroom in a blink. By time we got in he all but polished it off, *even the the ranch dressing that he flat out drank.* Since then he can't come to most potlucks cook outs and parties. It's a downright cruel disorder to have, an that from someone with CRPS.
I remember Katie from that documentary about that house place, called Haydock?
It’s on RUclips My Child Can’t Stop Eating (2004) Katie passed away in 2022, her father died in 2019
@@ljmcdonald2703RIP to Katie and her father....that poor mom...😢
Some of these comments are downright ridiculous 😂 do people not listen to the video?God won’t help them. Past life regression won’t either Or appreciate suppressants. It’s a cruel disease and the only way to survive is to live hungry your entire life.
Ozempic helps!!!! New info!!!!!people in research really care and help through medications. God helps them through people !!!! Don’t give up
Strange really I've worked in psych for many years an this wasn't a issue back then ? Actually we had so much of the opposite refusing to eat purging they're food water toxicity but this must be or have been very rare ? 🧐 Idk
@@peggypasson8794 Yes, this is a rare genetic disorder, not a mental health condition.
@@peggypasson8794this isn’t a mental health thing girlie
So many parents are blamed for their child's obesity. When all they needed was someone to give them a diagnosis and help. Its not a well known disease so it gets overlooked