A big shout out to all the other PWS families out there! Never easy telling others how our children are always hungry and them saying “sounds just like my child” when they have no idea. Routine is your best friend, my little girl just turned 12 and is kicking butt and amazing!
Cruel? i call it an EVIL condition that came directly from the underworld. The best description because forces you to eat until your stomach bursts and you die.
@@JessaHawke Well good thing it's possible to do *BOTH* ......and to find even *more* cures, or vaccines, *etc.* simontaneously 🙄 You *do* realise that not *ALL* the doctors in the world are working on *one single cure for one single disease* at a time, don't you? What a ridiculous and ignorant thing to say 🤦♂️🙈
@@strawberrysundae_megan If they can detect, the embryo will born with that evil condition can be aborted as a gentle way to not bring a patient with that demonic condition.
There MUST be a treatment for them.. either some sensation or hormone blocker because there is a hormone that causes hunger too. Apparently its also possible to become desensitized to that hormone.
In the 80s, many people used prescription, amphetamine-based appetite suppressants. As it turned out, as a diet, it was way more damaging than efficient on the long term, but the molecules do exist. I don't understand why science can't come up with some effective and inocuous appetite suppressant to help patients with PWS. I'm surely being naive, and hunger is only part of the problem of course, but I'd like to understand why this is not possible, I mean it would help a lot, wouldn't it?
@@Robohazradit's probably a problem of having to take a chemical every day, from toddlerdom onwards, all their lives. As we all know, most medicines have side effects, and prolonged use brings its own problems, including tolerance levels meaning a constantly increasing dose. It would have to be pretty strong to start with. If research is money led, there are so many type 2 diabetics, pharmaceutical companies are probably queuing up to be the first to produce a decent appetite suppressant that can be used for many years without side effects! As the problem is rooted in a faulty hypothalamus with PWS, there is no guarantee that any appetite suppressant that works on a normal hypothalamus, would work anyway.
They should team up with the makers of Ozempic since the this medication makes you feel full and and release the harmonies in your body that you are full…
Yes they already use ozempic and saxenda at the same time with metformine. And better if they get the gastric sleeve at the same time while using that medications.
PWS children suffer from constipation and it’s the brain that doesn’t stop sending signal to the belly that is full since it has to do with a chromosome which also can cause psychosis
@@veronicamedina277 Conversely, anti-psychotic medication can cause an insatiable appetite. It's often a reason that patients won't comply. I was given a tablet one evening while in hospital and while not feeling actual hunger, I felt the need to eat. A lot. All evening until I slept.
Shout out to the neighbor and credit card. What a humble human finding a way to distract himself and gained independence. Thanks for sharing.
Sounds like hell. Feeling of starving and never being self-sufficient
It is a hell! I have a similar condition and it is a hell!
@@Vegetarianbullgo to Binoid online and get CBD gummies Mango kind
A big shout out to all the other PWS families out there! Never easy telling others how our children are always hungry and them saying “sounds just like my child” when they have no idea. Routine is your best friend, my little girl just turned 12 and is kicking butt and amazing!
I've watch other docs on prader wili and they all talk, walk and act very very similar almost identical
Yeah many of the cognitive and physical and emotional characteristics are consistent.
OMG this is so wrong & so cruel ! We NEED more than anything to find a cure for this horrific disorder !
We should probably find a cure for something like uh.. ALS first
Cruel? i call it an EVIL condition that came directly from the underworld. The best description because forces you to eat until your stomach bursts and you die.
As it's genetic, it's not really very likely that they will find a cure.
@@JessaHawke Well good thing it's possible to do *BOTH* ......and to find even *more* cures, or vaccines, *etc.* simontaneously 🙄 You *do* realise that not *ALL* the doctors in the world are working on *one single cure for one single disease* at a time, don't you? What a ridiculous and ignorant thing to say 🤦♂️🙈
Poor guy. So humble and self controlled while fighting one of our most intense urges on overdrive
I hope they can cure the constant hunger even if they can't cure PWS.
they don't have a hypothalamus. how can they control an organ they don't have?.
@@maxmarrero-sb5ejmaybe not cure the ones alive but prevent people from being born with it then
@@strawberrysundae_megan If they can detect, the embryo will born with that evil condition can be aborted as a gentle way to not bring a patient with that demonic condition.
I can’t imagine always feeling hangry 😨
Heart breaking.
Yeah I guess you know what it's like
It’s heartbreaking ❤
One of my friends had it and died at the age of 29 years old and was in hospital a lot before she died in 2018
There MUST be a treatment for them.. either some sensation or hormone blocker because there is a hormone that causes hunger too. Apparently its also possible to become desensitized to that hormone.
You cannot control an organ they don't have , they don't have a hypothalamus.
Why MUST there?
Evil despicable condition. i have no other name to describe it.
It’s terrible, but evil requires intent. It is what it is.
I have an undiagnosed hunger problem and guar gum helps sometimes.
In the 80s, many people used prescription, amphetamine-based appetite suppressants. As it turned out, as a diet, it was way more damaging than efficient on the long term, but the molecules do exist. I don't understand why science can't come up with some effective and inocuous appetite suppressant to help patients with PWS. I'm surely being naive, and hunger is only part of the problem of course, but I'd like to understand why this is not possible, I mean it would help a lot, wouldn't it?
Me too, I know they have ozempic that doctors will give fat people with diabetes and it keeps them from getting hungry. I wonder if they will work
Because it’s part of the plan to keep customers and keep making money.
I'm sure it's possible. It's just not being researched. Science revolves around money.
@@Robohazradit's probably a problem of having to take a chemical every day, from toddlerdom onwards, all their lives. As we all know, most medicines have side effects, and prolonged use brings its own problems, including tolerance levels meaning a constantly increasing dose.
It would have to be pretty strong to start with.
If research is money led, there are so many type 2 diabetics, pharmaceutical companies are probably queuing up to be the first to produce a decent appetite suppressant that can be used for many years without side effects!
As the problem is rooted in a faulty hypothalamus with PWS, there is no guarantee that any appetite suppressant that works on a normal hypothalamus, would work anyway.
I notice that a large percentage of children with PWS live in AU and NZ. I wonder what the diagnosis/population is?
Like ashkenazi Jews or sickle cell anemia, this is caused by lack of genetic variety. Marry someone outside of your gene pool PLEASE
I am sad
My cat definitely has this
Would Ozempic work?
Ozempic
There is a medication for diabetic using also to obesity people. The medications porpise is to stop people feel hunger
Yes liraglutida (saxenda) and metformina
Imagine getting that credit card bill 💵 😮
He would die with only 100 dollar on food.
DCCR!
They should team up with the makers of Ozempic since the this medication makes you feel full and and release the harmonies in your body that you are full…
Yes they already use ozempic and saxenda at the same time with metformine. And better if they get the gastric sleeve at the same time while using that medications.
PWS children suffer from constipation and it’s the brain that doesn’t stop sending signal to the belly that is full since it has to do with a chromosome which also can cause psychosis
@@veronicamedina277 Conversely, anti-psychotic medication can cause an insatiable appetite. It's often a reason that patients won't comply.
I was given a tablet one evening while in hospital and while not feeling actual hunger, I felt the need to eat. A lot. All evening until I slept.
@@veronicamedina277 vagus nerve signal should be blocked.
AMBER LYNN REID
How many people from My 600 lb life have this but go undiagnosed? Did Dr. Now ever consider this?
I have sent in comments regarding this many times for 😂60
Ask maccas
Intermittent fasting helps
Not with someone that have constant ravenous hunger 24/7.
HINT: sounds like a chronic lack of zinc. if u dont have enough zinc in your body, your leptin (saity) levels are low, hence the chronic hunger.
LMFAO the dude used his neighbors credit card to get pizzas delivered to his WINDOW at night 😂😂😂😂
$500 worth of pizzas omg
Awesome neighbor!!
Not funny, actually sad and depressing
This not a 😂 matter this a serious problem I know a person who got this and think before you comment
@@rebeccamccready1135this and schizophrenia is