Never ending appetite: What is Prader-Willi syndrome? | Sunday Night Archive

[@jooyoonchung3593]

“It’s like asking someone to stop breathing.” My heart aches.

[@itravisoni]

To much food and oxygen are to totally different things. Her parents should have been as lit more careful. Bless them

[@kianisjuan1652]

@@itravisoni these kids could literally break into their neighbors house to eat food, It's not always so easy.

[@absinthemindedJ]

I have diabetes insipidus, and without medication, I would drown myself from drinking liquid. It's an intense thirst that you can't describe unless you experience it.

[@CMoore8539]

@@absinthemindedJWow! What kind of medicine do they give you for that? I’m also a very well known for drinking too much water. It causes me to lack electrolytes at times. I didn’t know that it’s a medical condition.?

[@absinthemindedJ]

@@CMoore8539 cranial diabetes insipidus. Medication is called DDAVP.

[@pipgirl7352]

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.

[@Rebecca_Bailey]

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

[@SavoxYT]

I knew she'd died, but where did you find that info about her weight getting so bad?

[@iTsEfFiNsTePhh]

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 😕

[@kaylakain6039]

Ugh she was the worst on the show

[@kaylakain6039]

@@iTsEfFiNsTePhhon the show she was one of the worst people on the show well and the 23 year old as well

[@kaylakain6039]

@@iTsEfFiNsTePhhthe documentary was filmed in 2016

[@raydabbieri2769]

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 😢

[@MissAlSabah]

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

[@esc1074]

So sorry to hear this❤

[@Lunchladydoyle]

They have experimental drug therapies now that can help toddlers with the muscle weakness that accompanies PWS.

[@Medinilla819]

Sending love and blessings to you and your baby boy ❤

[@JeeperzCreeperz-t2t]

Never give up and fill his heart with love❣️

[@Dee-743]

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.

[@eliesh3833]

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.

[@rhodes7394]

Teenagers don't need babysitters lol

[@JFKismyhusband_]

@@rhodes7394”SOME” most definitely do I can assure you that

[@Alicia-Rene]

@@rhodes7394ones with genetic mutations that cause developmental delays do. What a foolish thing to say

[@wendydomino]

@@rhodes7394 A teenager with PWS does need a babysitter

[@katykircher7413]

I can't imagine what a nightmare this condition would be - both for the person suffering from it, and for their parents.

[@deepthoughts8393]

There’s a worse one that you can’t sleep

[@sunnystormy4973]

-i have crazy chronic insomnia ...-

[@00zarzu00]

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.

[@KristenBlack-fy9lr]

Yeah me I been bullied my whole life and I’m still a teenager

[@NancyAyers-ek7eo]

This disease is outrageous because its victims are chained to food from day one. At least drug and alcohol addiction usually holds off until at least the teenage years, so the family gets to enjoy their child for a number of years! I would have to seek professional help if I was pregnant and the scans and tests caught the Prader-Willi Syndrome, I would absolutely not have the baby, not just for my own sake but to make sure I don't bring someone into the world afflicted this way, whose happiness depended on the next bite of food - with the only respite, sleep. It's particularly cruel. In fact, in my mind it's right up there with cancer! You don't have the tumors, but you are suffocating slowly underneath the fat, which grows day by day, just like a malignancy.

[@heathergreenakers]

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.

[@major_thomasina]

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.

[@Alice-fo2jf]

I wonder if she has tried a raw onion and mustard sandwich on rye bread.

[@mr.selfimprovement3241]

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.

[@LetsSingTheDoomSong]

​@@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 💀

[@lotuspocus76312]

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.....

[@c.swinford8283]

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.

[@annenelson5656]

Mayim Bailik has a foundation to study Praeder-Willi Syndrome. I would so much like to see more attention to this condition.

[@Kloetenhenne]

Incredible woman

[@carlinfan-m7v]

Oh thanks, I'll look it up. She's amazing.

[@--Animal--]

The genocide apologist? no thanks.

[@pink4078]

@@--Animal-- Im with you. Mayim needs to cleans her soul. Genocide supporter.

[@duck6100]

@@--Animal-- I mean yeah she is that but it doesn’t mean more attention shouldn’t be given to the syndrome, the two things can be independent. Criticise her opinions and character but leave her external work on this, which is doing a good thing, alone

[@henrysmom1742]

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.

[@theTerriberg]

How did you know them?

[@PupcakesDogCare]

Omg tragic 😢

[@rellyrob7062]

@@theTerribergthat’s a weird question

[@Bring-Me-Tea]

They said in the documentary people with PWS can't vomit though.

[@hw7003]

​@@Bring-Me-Tea they physically can vomit, it's that they lack the reflex to vomit when they are overfull or choking or nauseated. If his stomach was full of antifreeze eating away at it that might have triggered vomiting anyway.

[@aliceglover5973]

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.

[@oldwomanranting]

Yeah I saw that one too and I was shocked by how much weight she had gained by the filming of this vid.

[@ljmcdonald2703]

@@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

[@ery8859]

Yes, I remember her too from other documentary and often wonder what happen to her. It's really sad to know that she died. Does anyone know what happen to Sachin and Rebecca?

[@goingunder2548]

Sadly even her 'filler' food wasn't THAT low. A pile of cauliflower, broccoli, Brussel sprouts, carrots etc as part of only one meal is still easily 100 calories. And her daily limit at the time was 900.

[@awesome_comment]

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.

[@ljmcdonald2703]

Katie died in 2022 due to her condition at the age of 41

[@MarshaNPILoveCanada]

​@@ljmcdonald2703 Oh 😢 🙏🏼 At least she's not suffering anymore, right?

[@iTsEfFiNsTePhh]

Oh my god that poor fish 😕

[@leannebyas7122]

​@@ljmcdonald2703that's so sad to hear, poor Katie she only wanted to be independent

[@shadaeChevelle4737]

😳💔 omg

[@lucianna1982]

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

[@RaeWetherillMusic]

That's really sad

[@aftersexhighfives]

Well, she's at peace❤ and she was so very loved while here.

[@toffeetoffee6457]

Ohhhh no 😢

[@Ms_Nightshade]

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. 🤍

[@ljmcdonald2703]

Her father died in November 2019

[@tatianaflores1926]

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.

[@singleeyedcat3608]

“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.

[@s311kyra2]

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.

[@JennyKonrath]

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

[@PrairiePriss]

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.

[@4ever9zxyme]

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

[@mrsfahrenheit]

@@4ever9zxyme I wish you all the best❤

[@s311kyra2]

@@PrairiePriss 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.

[@sherimoralesrowe5078]

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.

[@amyg8761]

Seriously imagine what it would be like to feel hungry all the time!! Maddening. It must be horrible. And so worrisome for the parents.

[@vulvavavoom]

Exactly: it's bad enough for people who suffer food insecurity and feel hungry MOST of the week. But sometimes, when they find food, they get a little bit of satisfaction and RELIEF from the torture. I have 24/7 pain from an accident, and it's the fact that your body-- and much more importantly, your mind-- never get a break...it can drive you insane. The fact that so many intellectually disabled people are able to accomplish something so incredibly hard is astonishing. I'm proud of them as examples of the human spirit.

[@Rae_Naeee]

When I was pregnant I hit the stage where I couldn’t stop eating..I’d get up at 4am every morning & eat like crazy! I would literally cry because i literally tired of eating & I knew I wasn’t that hungry but it was just the pregnancy!! I couldn’t imagine having this syndrome!!

[@wonderingsoul8021]

So sad. I learnt something new today. Very sorry for her, other people suffering, and their families

[@Karen79954]

My nephew was born with this syndrome. His condition was worse, but he had professional help. He could not talk due to his tongue.

[@00zarzu00]

probably due to hypotonia

[@ahappilydrunkpuppy8961]

What was wrong with his tongue?

[@patienceboafo1998]

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

[@Wodenseyes]

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.

[@zxyatiywariii8]

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 💔

[@Wodenseyes]

@@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]

​@@Wodenseyesnot even crisper can make a difference ?

[@Wodenseyes]

@@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

[@jah7536]

@@Wodenseyesthere are actually a few treatments that have become available, thankfully! Daily HGH shots have worked wonders for my daughter, she started getting them at 4 months and, within the month after starting, her feeding tube was removed, strength was developing, it’s a godsend! There is also a new drug for the appetite, DCCR, which is showing some positive results!

[@susanm1109]

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.

[@ninaappelt9001]

It was identified in the 1950's.

[@ljmcdonald2703]

Pica

[@yukifuki1621]

​@@ljmcdonald2703 if they did not eat anything inedible (like metallic objects etc) it is not pica

[@Bella-gj6wc]

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. ☹️☹️☹️

[@Bella-gj6wc]

@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]

​@@Bella-gj6wc❤❤❤

[@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. ❤️

[@melanytodd2929]

​@@Bella-gj6wcyou're SO special ❣ loads of love from South Africa 🇿🇦 ❤

[@melanytodd2929]

I've got 1 child, have fostered 2 more. The circumstances are BEYOND speech.

[@midnightcat6116]

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 💗

[@mlady6564]

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. 💕

[@ljmcdonald2703]

She died in September 2022 at the age of 41 due to her obesity

[@samanthamunoz6874]

@@ljmcdonald2703really?! Oh no! Do you have any sources?

[@Itwasalladream1987]

​@@ljmcdonald2703😢 how did she put all the weight back on?!

[@samanthamunoz6874]

@@ljmcdonald2703how do you know?

[@carolindorotheemcgroarty620]

​@@Itwasalladream1987 She never lost it to begin with.

[@realiteadiggers]

I had a gastric bypass surgery in 2008. I am barely 5’ & was 222lbs at the time. This surgery forever changed the trajectory of my life. I have had trouble eating pretty much ever since & was 79lbs at my lowest recorded weight. Ended up on Hospice & had multiple different nasal feeding tubes. Then my Mother had me conserved & brought me to her home in a different state. Here they attempted a different surgery which places the feeding tube into my remnant stomach rather than just the pouch that food I eat is digested in. Ultimately it saved my life & I’m going to be tube fed for the rest of my life. They’ve tried everything except for reversing the gastric bypass but that would not even be possible due to my history/conditions. I forgot what hunger feels like & to further complicate things, I cannot smell or taste anything. This is probably the primary reason I don’t feel hungry. Either way, anything thicker than tea/water makes me incredibly sick. I say all this because in a way, I can relate to her struggles & I hope she has found peace.

[@janegallagher6162]

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.

[@moseschrute]

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

[@Alicia-Rene]

@@moseschruteshe already passed in 2022.

[@Beccasgames]

Oh my god I love Katie, she’s in a documentary from years ago. So happy to see her

[@McCarthy0000]

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!!

[@redheadedstepchildatwalmart]

i had BED my entire childhood through my teens. i just want to tell you there is hope! i am probably 2-3 years without a binge now, and all my hunger signals have finally returned to normal, as well as staying a consistent weight. its hard to fight but you can get there :) i feel horrible for people who have such a tragic condition where their body just cannot adjust. its truly terrible, i can't imagine.

[@tarabooartarmy3654]

I had it too. Most of my life I struggled. I got up to around 350 pounds. I’m down by about 150 pounds now and doing so much better.

[@earlineprice9374]

Please dont pick on people that are handicapped they are so precious and also they deserve to be loved ❤

[@ravenbaa7989]

It’s not a handicap

[@colorbugoriginals4457]

​@@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.

[@raydabbieri2769]

@@ravenbaa7989 how is it not a handicap?

[@cynthiaweygandt948]

You are so right. Thank you for your kind and compassionate comment

[@Tammissa]

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_Kan]

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.

[@gizzystravels4677]

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.

[@sunnyzengaravito4930]

Eating non food items is called Pica

[@adb8003]

@@sunnyzengaravito4930not when it’s called Prader Willie

[@sunnyzengaravito4930]

@adb8003 look it up

[@alexcholagh8330]

Pica,autism,and pradie Willie symptom are different diseases and conditions.

[@Brwneydgrl69]

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. 😢😭

[@QueenofMarine]

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.

[@esc1074]

This is so heartbreaking😥

[@lucymaty4545]

With so many medical advances these days I’m shocked there is nothing to help with this issue

[@Arete37]

I'd want to try hypnosis.

[@ivebel3966]

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

[@Jendromeda]

@@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.

[@Balletified]

They’re treating it with Mounjaro in my country, apparently it works (a bit)

[@Balletified]

Successful rapid weight reduction and the use of liraglutide for morbid obesity in adolescent Prader-Willi syndrome - study -

[@THERTOGAL]

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.

[@frankiefranklin9761]

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

[@ljmcdonald2703]

Katie died in 2022 due to her obesity and breathing issues

[@nukaghoula]

The australian health care system has so little funding for disabled people. Its absolutely shameful.

[@billmartins5545]

There's just way too many people who need care. Maybe we should deal with the source.

[@coyotelong4349]

@@billmartins5545 Deal with the source of Prader-Willi Syndrome?

[@TheBabe61]

NDIS, better than USA. That’s a bold statement

[@frijjfan]

​@@billmartins5545 what the hell are you implying

[@ljmcdonald2703]

In New Zealand the government are cutting support for them and firing caregivers because they “can’t afford it”

[@KaeMae_]

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.

[@katerinathatcher7004]

Really?

[@KaeMae_]

@@katerinathatcher7004 yes really. It's very interesting. But quite rare.

[@melatoninqueen6914]

RIP Katie, may you enjoy eternal paradise with no more PWS

[@Orangeshebert]

I had no idea of this syndrome. My heart and prayers to these families.

[@kerriecu2]

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.

[@diannejones3548]

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.

[@androgynylunacy]

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... :/

[@moruthecookiemoster9267]

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.

[@eerielconstantine5051]

When I started sertraline I was constantly hungry, but it did wane

[@maggiee639]

@@moruthecookiemoster9267probably what has been available didn’t work. I am wondering if ozempic or some similar drug could help them.

[@unhiddenhistory]

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.

[@matthewlove4082]

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.

[@kittenmittons1968]

Leticia and her sister had me tearing up, beautiful ladies❤

[@EdwardVGrimm]

💯 💯 💯

[@megandolimpio6579]

What a sweet girl, so innocent

[@MissGBinFrance]

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.

[@ljmcdonald2703]

She died in 2022

[@MissGBinFrance]

@@ljmcdonald2703 I'm really sad to hear that. Thanks for telling me.

[@Bcshe1]

Good on the UK government for covering that care. Now our government needs to step up.

[@steve-gv7yn]

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.

[@tamedshrew235]

Too heartbreaking. I can only imagine her parent's anxiety. 🙏

[@Emily_Charley]

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

[@colorbugoriginals4457]

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. ❤️

[@cynthiaweygandt948]

Ozempic med may help ! New info !

[@desertatable]

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.

[@crohniequeenab]

@@cynthiaweygandt948can’t help this is genetic. This is in their genes not a disorder.

[@buck3241]

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.

[@Loner548]

The last lady just had me stuck in thought "she says, she feels bad for basically giving birth to her son and making him live in this cruel world". I never knew our pain could ever sit on our parents in such a way 😢 R.I.P guy.

[@carolynworthington8996]

Having this syndrome must be like torture.

[@kathleendowner6503]

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

[@emanthekind2140]

So many people these days sadly have no empathy. Have no consideration for other people’s situations and what they may be going through. They think of no one but themselves and the immediate people surrounding them

[@lorpsandorps3729]

That is an amazing way to describe it.

[@YamiyugiXenith]

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.

[@lesliemcmillan2971]

Being hungry 24/7/365 is not the only hallmark symptom of Prader Willi. It is just the most obvious and difficult for family to manage.

[@Halconium]

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

[@whoputyouontheplanet3345]

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.

[@BrittanyCocchino]

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.

[@Sileaine]

Probably not if it's the brain rather than stomach but some of those meds change appetite

[@87nknight]

It helps your mind too I was thinking it would help

[@dontmindme3852]

It slows digestion and since they can’t feel pain it would probably end up blocking their stomach

[@ljmcdonald2703]

Not everyone loses weight on ozempic

[@soxpeewee]

I was thinking phentermine or another appetite suppression drug that boosted metabolism would work in combination with metformin.

[@willowburke150]

Katie seems like such a genuinely kind and pure person despite her overwhelming condition

[@BadgerDevil]

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.

[@michellesimpson6639]

I have the same problem and it is hard...people call me anorexic and constantly ask me why I don't just eat more...

[@BadgerDevil]

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.

[@michellesimpson6639]

@@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

[@BadgerDevil]

I was also shocked, I have never heard of anyone else with this. We are rare, that's for sure. 🙂

[@adristrydom5154]

What an amazing wonderful facility. This is what people need who suffer from this disorder. This gives them a chance

[@MissClemintine]

Precious lady, I hope she’s okay these days ❤

[@ljmcdonald2703]

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.

[@tanana2070]

Such a heartless illness. I never heard of this before and I'm 72. God bless these dear ones!

[@C0FFEE_AND_DR4GONS]

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..

[@persimmons5390]

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.

[@ljmcdonald2703]

@@persimmons5390she died 2 years ago

[@ljmcdonald2703]

The younger girl in the documentary Rebecca was almost as destructive as the Indian guy

[@maetay1256]

​@@persimmons5390I read that she passed away 2 years ago, unfortunately

[@hugablestpersonever]

I've supported a lady with Prader-Willi syndrome and she's been able to thrive with the right restrictions in place and the right support. She's lived into her 50s and she's even lost weight! With the right supports, people living with this syndrome can do well.

[@noelwatson2237]

I’m a stay at home wife and I’m so grateful my husband was able to do that for our family. ❤

[@amypatton2080]

This is so bloody sad. That mother crying and crying through the whole interview 😢

[@purplehearts3287]

This is beyond heartbreaking. My prayers go out to all the families. 💔🙏💜

[@bjdis33]

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

[@74Rockme]

My Stepdaughter is 39 and has this condition, it's very difficult for the patient and family. When these patients live at home it's nearly impossible to keep their weight down. They need constant supervision. It is like living with an addict. My Stepdaughter lives in a group home which greatly helps keep her weight down and gives her the structure that she needs.

[@cah1964]

I’m curious as to how the ones who live in a controlled environment deal with the constant feeling of being hungry. Do you happen to know?

[@74Rockme]

@cah1964 My Stepdaughter does arts and crafts and uses handheld games to keep her busy.

[@shadaeChevelle4737]

My God! 💔 Having a baby is such a gamble .. it’s terrifying actually

[@rna1561]

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 😞

[@evgenikamsk3147]

My nephew has this syndrome, he is 2 years old, he still can’t walk, he can’t speak. It’s not only unlimited appetite . He is a very sunny smiling boy. We love him ❤

[@joaris333]

I'm not sure if this is true, but each person with this disorder seems to also be developmentally delayed as well. I wonder if there is a connection 😢

[@rayray5662]

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.

[@marsilyalittlebird1504]

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.

[@CMoore8539]

That would be a very difficult situation to be in. I can’t even imagine what the parents go through. All parents want to give their children all the things that will be better than what they had but the main thing that children really need is Love and Acceptance.

[@becca3146]

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.

[@elliebellie7816]

Definitely something worth investigating.

[@kitandrews8638]

I wonder if binge eating hunger is different than natural considerably largely hormonally directed hunger.

[@einstein9901]

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

[@crohniequeenab]

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.

[@Balletified]

@@einstein9901mounjaro works on the brain. That together with Contrave could provide relief.

[@keiona1212]

This is so heartbreaking. Praying for All who is affected by this terrible disorder 🙏🏾🙏🏾🙏🏾🙏🏾

[@Bettinasisrg]

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!

[@SuzyBenz]

Side thought here… pardon my ignorance for this idea but knowing what we know now, could a Dr prescribe Ozempic for these people? I know Ozempic is for regulating diabetes but these people are at their wits end, this disease looks debilitating. I know Ozempic slows down appetite and can be controlled based on how much is given . Wish a Dr. could respond.

[@LetsSingTheDoomSong]

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

[@Ashleyofthewolves]

Me too suchin I think his name was. He was a jerk and he smoked and drank too.

[@debb4809]

I've seen that one too.

[@seigedrakonera5689]

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.

[@jokehokke283]

This is so sad. So difficult to deal with as a person and for parents. Beyond believe!

[@sandyusa-tw1xx]

RIP my darling Katie 😢

[@claudettes9697]

I’m super proud of Leticia. 🙏🏻💖

[@andrewattenboroughtwothumb4697]

one of my friends had it died at 29 years old because of problems related to prader willi syndrome

[@ninaappelt9001]

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.

[@Nina_Olivia]

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.

[@williamparker7025]

The ones in the home who lost weight all have the haunted eyes of war veterans who've seen the most awful things. Their lives must be constant suffering.

[@motleymama6587]

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.

[@cynthiaweygandt948]

Ozempic helps!!!! New info!!!!!people in research really care and help through medications. God helps them through people !!!! Don’t give up

[@peggypasson8794]

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

[@kaclama]

@@peggypasson8794 Yes, this is a rare genetic disorder, not a mental health condition.

[@inthewoods5494]

@@peggypasson8794this isn’t a mental health thing girlie

[@anitaheart]

Sweet angels, so sorry for everything Katie, James and their families had to go through. They’re in a beautiful place with God now. 😢

[@sarahrussell3219]

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.❤

[@xvnsxxnz]

My 5y/o is currently going through the same thing due to steroids for asthma.

[@sarahrussell3219]

@@xvnsxxnz So sorry.

[@LindaZeno]

My daughter went through the same mess with Prednisone.

[@sarahrussell3219]

@@LindaZeno It’s awful. I sat with a huge bag of bubble gum in my lap and chewed the sugar out of it. I ate my sister’s candy out of her candy dish and was so embarrassed but couldn’t stop. I crammed food constantly.

[@irmam8339]

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

[@Dawn_LR]

Then the child may be another version of her.

[@ljmcdonald2703]

People with Prader-Willi are infertile due to sexual immaturity, their reproductive organs don’t develop like a normal person

[@Starfish2145]

So sad. This is why it’s critical to get genetic tests

[@nutmeg1945]

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.

[@Crysomandiaz]

It is possible to test for in early pregnancy with a blood sample from the mother, but its expensive.

[@crohniequeenab]

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

[@Crysomandiaz]

@@crohniequeenab abortion.

[@phuck8627]

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

[@imanilovely176]

I wonder if there would be any benefit to micro dosing psilocybin?

[@BellsofNevermore]

I don't have this, but I am morbidly obese. Zepbound and psilocybin ABSOLUTELY help me. The 'flesh of the Gods' has done a lot for my neuropathy and depression. (I admit that sometimes my dosing is not very micro, though!😂)

[@lesliemcmillan2971]

None. This is a gene deletion.

[@janetjoiner9204]

BLESS YOU ALL!

[@laniecelomack8087]

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.

[@lesliekloer8544]

I knew someone with PWS that would order alot of Pizza to be delivered, when they arrived with the pizza, she would assault the delivery person, steal the pizza and gorge.

[@anjayvonne1990]

Oh my gosh. That's so sad.

[@j.artiste8596]

That's not sad, that's scary. Being handicapped or hungry doesn't justify assault. Most homeless people are way hungrier than these people, but don't assault anyone.

[@anjayvonne1990]

@@j.artiste8596 It doesn't justify it, but it IS still sad. It's sad to be so out of control of your hunger that you attack others just to get it. That doesn't mean they don't deserve jail. Something can be sad and terrible at the same time. I stand by what I say. You may have your own opinion.

[@LunaLuna_moonchild]

That’s kinda disgusting

[@irmam8339]

That’s horrible