Fatal Familial Insomnia

[killyoubitch27]

1.75 bottle of vodka. that will make him sleep our kill him witch ever comes first

[mustwinder]

You think about diseases like this and Rabies, euthanasia should be an option for people, the suffering is horrific.

[ClaritySWE]

Ladies I present to you: Cannabis. A couple of puffs on some good Indica and you'll be sleeping in no time.

[xxxThefunnymonkeyxxx]

@ClaritySWE lol. but sadly they can get addicted and die.... and i think they'd rather save their life lol

[dissinU12]

lifes' a bitch and then you die... this is the bitchiest way to live life. Dang.

[nickbruck101]

i was about to shit a brick i thought this guy was going to stop the recording right before it said if she had it or not

[Arnebananlolo]

Don't allow them to reproduce, just like we shouldn't allow people with aids to reproduce.

[parasitegemini]

Stop having kids. Problem Solved.

[CharlieTeague]

This disease looks both dementing and painful.

[bibi5027]

@CharlieTeague cuse you became demnting when you get it,cuse your neurones dying

[CharlieTeague]

This disease looks painful.

[tangaparadise]

terribly sad;maybe gene therapy breakthroughs will help cure this in the future; or maybe even prevent transmission-seems like a terrible agonising way to go

[chrissline77]

See I'm here because I'm studying nursing. And the more I learn about diseases the more freaked out I become. I start to imagine that I have the diseases I'm learning about.

[Reuben961]

@chrissline77 Well atleast IRL u dont hear creepy music while watching sad stuff...

[helorm341]

Why wouldn't you want to know? Wouldn't you be terrified every single night you couldn't fall asleep very fast? And then that fear would just make things worse? God if someone could look into a crystal ball and tell me how I'd die I would certainly want to know!

[TellitLikeItIs123]

what is REALLY disturbing is that people who carry this knowingly reproduce.

If the VERY FEW carriers of this disease in the world (it is an orphan disease that affects a tiny, tiny portion of people - a few hundred) decided to not reproduce this disease would cease to exist.... BUt like all people who have no clue how to make life meaningful without procreating, these people selfishly and irresponsibly continue to have children... we are a doomed, evil, selfish species

[PrUnEJuIcEtHeThIrD]

@TellitLikeItIs123 Offspring only have a 50% chance of inheriting the bad gene that causes this disease. And since the average family has around 2 kids, do the math and it'll tell you that the rate of new people with this disease isn't changing much.

[nickbruck101]

@PrUnEJuIcEtHeThIrD but there was only one person to have the disease to start off with now thee are 40 family's so it can start to increase again

[JohnBrody23]

Bullet to the head while I still can, I mean the alternative is just fucked up. Overdose on pills or something, I mean it sounds like a nightmare, worst thing is you KNOW what's coming, there is NO hope, just the inevitable.

[WWPSdvia]

Agree with you, why would she have children knowing they have strong chances to inherit the fatal disorder ..you do know that a child has big chances to inherit the genes from grandparents directly.. Both my parents have brown eyes, me and my brother we have both blue eyes like my grandfather ...

[lilyatheg]

@WWPSdviathis isn't handed down that way... you don't inherit this from grandparents, the alleles come from parent carrying it...

[WWPSdvia]

It's fascinating and scary at the same time !

[ILLESTwhiteNI66A911]

If I knew I had this ID CHECK OUT ON MY OWN.

[FractalBolt]

If I had this disease I would contact some media head honcho and convince him of doing a reality TV show of my last days.

[airmaxltd94]

i know this is far fetched but can't they knock the victim out with an object or trigger a sleeping pressure point in the temple? there must be something! :( I feel sorry for these guys

[ceke72]

@airmaxltd94 Unconsciousness isn't the same as sleep. Believe me, if it was as easy as just rendering someone unconscious I'm sure they would have already thought of it. As it is they've tried sleep medications, heavy doses of barbituates, placing the person in an artificial (medically induced) coma, general anaesthesia, and probably more. Nothing has worked, or helped. Currently there is no known treatment, or cure for this disease, and so far Gene Therapy hasn't proven effective either. Sad.

[Qodaet]

@airmaxltd94 Nothing can replace natural sleep. A faint or a coma-state have not the same functions of sleep. Even hibernating animals must wake up sometimes to sleep for some hours before resuming hibernation (they don't actually sleep when they are hibernating, though they remain unconscious).

[spresco9]

5:28

[spresco9]

4:32

[ninjajesus81]

@killyoubitch27 Good thing someone in the Youtube comments knows how to cure a disease no doctor in the world knows.

[ninjajesus81]

@killyoubitch27 You don't think they've tried that? How much dumber do you think everyone is than you?

[ninjajesus81]

@killyoubitch27 You said something stupid, now you're mad that I pointed it out.

[ninjajesus81]

@killyoubitch27 I should when they say stupid things.

[Qodaet]

@killyoubitch27 Painkillers or any other kind of sleep-inducing substances don't work because in FFI the part of the brain which controls sleep is literally being destroyed by the prions (malignant proteins) and there's no known way to stop the process. This is not like a common insomnia. All prion diseases are so far incurable and ultimately fatal.

[fenriz218]

Fatal Familial Insomnia - extremely fascinating stuff!

In my mind, the only way to die in a more painful way would be rabies ...

... but if the format of this show and the presenter isn't the douchiest thing I've ever seen! This looked like a bleeding game-show - surprised they didn't hand out microwave ovens ...

[xsasukaxuchihax]

I REALLY don't meant to be mean or anything but...

LMFAO at the "hints"! XD Obviously, you'd KNOW to put a VCR in first. XD

But, on a serious note...I hope there'll be a treatment.

[alienfreaklol]

this is so cruel . god bless them ._.

[jackxlmurphy]

Obviously you should find out whether or not you have it so that you can decide whether or not you want to have children, if you don't want to pass it on, or to know if you'd need to screen the fetuses for the disease (if that kind of stuff is OK with you).

[WinterTroll]

This seems like a very torturous way to die. My heart goes out to all those who have FFI,and their families.

[numbertwoful]

i really dont understand all these people deeming the sisters (or any others with the disease) slefish for having kids. and in reference to an earlier comment, they dont condemn their kids to a life of suffering. what a damn stupid remark. i feel more sorry for kids who grow up being abused then kids with a possibility of the diease.. like breast cancer had inheritable factors, as do other genetic diseases.. everyone dies at some point and you can still have a happy normal life regardless

[bibi5027]

@ostskateteam Try dont sleep just 3 days,and then we will see,what fast you will be idiot

[beachbumcag]

i think i have this b/c i have spells where i can't sleep!!!! i took 15mg of remeron and a 0.5 klonopin and still kept waking up! maybe michael jackson had this!!!

[razorafterdeath]

try melatonin or pot

[bibi5027]

@razorafterdeath If it would possible,so doc would gave them,melatonin,will not work for you,when center of your brain what control sleep,dont work 

[mbamay26]

TIVOOOO

[RWH58682]

The amyloids form in the thalamus...basically shutting it down...and thus your ability to sleep. Thai Ngoc has said he hasn't slept in 33 years...obviously bs. These people die within 9-12 months of simply not being able to sleep. That is the defining symptom that leads to all the other complications (confusion, loss of hunger, physical fatigue)

[Dougcl79MUSIC]

jesus, what a curse....

[cuteminti3]

I watched a documentary on FFI on the discovery science channel . It was awful, one family had the disease running in the family since the 1900s or something. The mother was describing how her husband, her mother, both her aunts and her cousins died from it. I felt so sorry for her and her children.

[NinetiesYouth]

I would just do heroin - even if it does nothing for sleep.

[GatmanReviews]

lmao

[valiantfocker]

Yup if I found out I had this disease, I'd do every drug possible, 9months left before the worst torture of time? Why not.

[laniasmith07]

@valiantfocker you have this?

[agata521]

@laniasmith07 he wrote 'If I found out'

[jasveenpuri]

i bet cheryl is tripping balls esp after her sis passed the test

[Nanumir]

wow I remember seeing this story a few years back, as a result I had an entire partially sleepless month due to anxiety

[yeeen123]

So SCARY!!!

[Diabolous3x]

goodbye health care

[brujonagual]

i thinkh that grass at 00:46 is african grass, Eragrostis lehmanniana !

[ukleticobanin]

can marijuana help? Insomnia sucks ass :S

[Roughneck8]

Marijuana doesn't really help..trust me.

And insomnia is a term too loosely used, there's a lot of other sleep "disorders" that you may wanna look into.

[Roughneck8]

and before I get flamed I mean for a long term sleep deprived person marijuana doesn't help. Sure it helps alleviate worries n all but it does jack shit for sleep.

[valiantfocker]

Agreed Mari-J doesn't help you sleep, rather helps you relax, which in turn CAN help you sleep.

[bibi5027]

@valiantfocker ee,they cant sleep cuse part of brain what control sleep ,doesnt work

[bibi5027]

@Roughneck8 just other arend deadly

[bibi5027]

@ukleticobanin ee

[constantinosalazar]

Well Mr. godleeone maybe your family have diabetis or some other genetic disease, so you all should not also be allowed to reproduce.

You facist.

[godleeone]

I am furious at the fact that these people are not restricted from having children. The utter selfishness of having a child, while knowing full well that they will have a 50/50 chance of passing on this horrible disease to their helpless children makes me sick to my stomach.

[xerolalala]

And your a god crazed christian or catholic? Im no atheist , but shut the fuck up.

Am I correct?

Selfishness of having a child ?

When you have a child you know they are going to die,

and they could die a terrible death from a disese.

So I guess EVERYONE should be banned form having children.

Am I right "Godleeone"?

[godleeone]

lol, I'm not religious at all. What I am pissed about is that these people are willing to condemn their children to a life of suffering. Yes, we all die but we don't all have to die of insomnia. I can't begin to imagine how painful it must be to die that way. Anyway, having a child simply to fulfill some instinctual desire while you know that child may needlessly suffer from a horrible disease is incredibly selfish.

[godleeone]

These people are essentially saying, "my wants and desires of having a child are much greater than your well being. With that said, I am going to have you so I can fulfill these desires, by the way I love you, and if you die of this horrible disease that I'll likely pass on to you just remember that all "I" wanted was to be happy." If these people really cared about their children, they would have been too scared to have them in the first place. Hence, it is a selfish act.

[lausungenwpww]

Agree with you! its absolutelly horrible and cruel off them to have children and dooming the future of their children!

[blackfireINSANITY]

The thing is you can't tell if you're going to have it.

[godleeone]

These people shouldn't be allowed to breed...

[eatslotsawhat]

I wonder what happens when they tranquilize the shit out of these people...

[spnky92]

i saw this guy with it it has litle effect unless you do it enough to pu them in a coma but then they are still thinking and awake only unable to function

[chadpopstar]

did they eat beef?

[SourSweetSoul2]

FFI doesn't happen because of eating beef. It happens because of a genetic mutation in one of the brain's proteins (PrP). When these proteins are changed they're called (Prions) and they resemble those found in cow having mad cow disease.

[awepro]

What would be the point of getting tested if there is no cure? All it can do is to make you focus on your own death and die even sooner.

[SourSweetSoul2]

For the daughter who's a mother, as shown in the video, it's better to know to prepare her kids. Fortunately she's negative for the disease.

Some poeple may want to be tested so that, if they suffer from any of the early symptoms, they know what it is.

Or if they test negative, they exclude FFI from the list of diagnoses of personality changes, difficulty sleeping...or any of the early symptoms of the disease.. it'll be easier to diagnose I guess!!

[LibertineLover07]

would you not just kill yourself than go through months of that

[loky4000]

hurrr lets get pregnant and THEN get tested

[clarkcolt45]

only idiots get children when they know that they will pass on a deadly disease to them..

[EpicBexy]

It's still 50% chance they will pass on an inherited disease. And in some cases the parents aren't even aware of they being carriers. Thankfully, with science, that can be hindered.

Your argument is like this: If I were to have a child with a dark skinned partner I know my offspring would have another skin color than me, thus getting higher risk of being killed by racists than white children. Therefore I'm an idiot.

[clarkcolt45]

Yes, you're an idiot if you live in a racist country and get dark skinned children - OF COURSE!

That's why most jews sent their children to England when Hitler won the election.

And most jews didn't even think about getting children at that time lol.

If you didn't know that the nazis were going to win, then there's a whole different story.

But if you KNOW that they're winning, and still getting children - then you're a real idiot.

Science gives us knowledge to prevent being an idiot. lol.

[ErichoTTA]

I'd use the extra time to go on the Internet.

Seriously though, great video.

[WOLF333999]

Oh oh, I am going to get sleepless nights from having watched this ...

[Imaginaryflower]

I know, this is a nightmare....those poor people. I can't imagine how terrible they feel.

[LibertineLover07]

lol @ 'this is a nightmare' - irony!

[AGeNt7eVeN]

Failing that don't let them breed...

[AGeNt7eVeN]

Give them DMT

N,N-dimethyltryptamine

[BottomBoosh]

Thai Ngoc claimed of being awake for 35 years.

[CornellWolf]

Can you get Fatal Familial Insomnia as a teenager? I have had trouble sleeping for months and last night I had no R.E.M. sleep. I was only half asleep. I couldn't even remember falling asleep.

[MichaelBradus]

"40 families world wide"

[FlameltaSK0]

Not very likely, I have trouble falling asleep sometimes too. This seems like a dominant trait, so that means if you have it, at least one of your parents should have it.

[cuteminti3]

I havetrouble sleeping a lot too. I cant remember falling asleep sometimes and I have really vivid dreams.

[bibi5027]

@cuteminti3 I have this same,but it is different from FFI

[bibi5027]

@CornellWolf it is OK,I also sleep for half already 30 years,it is pretty different from FFI

[Andster09]

I remember i found this when i looked up insomnia on wikipedia.

a scary and strange disease.

[awwbutton2386]

fuck that's sad

[xXDyingDarknessXx]

thank god she does not have the mutation, god help them.

[faceofjesusinmysoup]

The longest I went without any sleep was 6 days

[CornellWolf]

I'm Italian and I can go days without sleeping.

Maybe I have this. I always wanted to die in a unusuan way. This looks painful though.

[ThunderousBuns]

If you DO get to sleep though, you don't have it. These people cannot sleep at all.

And on a side note, that's extremely bad for your body, both mentally and physically, whether you feel it or not.

[drotheill]

I am.............  :(

[TheCakeAintNoLie]

having children even though you know that you may have a genetic disease like that?

that's just stupid.. she is such a twat

[PandaDottz]

just beacause people have an incurable disease does not mean that they should try to live their lives. They can have children if they want, but they should be aware that there is a 50-50 chance they might carry it as well.

[abominableaussieman]

Thats true, but they should also consider adopting if the genetic disease that may be passed down is bad.

[hmasoomifar]

you cant just take away peoples lifes, your basically telling them than since they may pass it to their children they shouldnt even have kids.... they are entitled to as much of a normal life as you or me. if you had FFI would you want it to ruin your life and put you on a different path than the rest of the world?

[davogarciao]

If I had the disease I wouldn't be so selfish as to have children knowing that someday they could have the same fate.Having to watch their parent die knowing that their is a 50% chance that they would die the same way, which honestly looks painful.

[frylord333]

I completely agree.

[ohwhatfunlifewas]

@davogarciao the disease has an onset of middle-age, well after most people have decided to have children. and since the disease was only diagnosed 10 years ago, along with the knowledge it was inherited genetically, most of these people did not make a "selfish" decision knowing they would die of this disease and pass it down to their children. only now can the current generation of genetic carriers make an informed decision.

[teenageboy68]

That's generally how it goes with genectic disorders. If someone wants a child that badly, and has a genetic disease, they should consider adopting. The life quality of a child trumps blood relation any day.

[EpicBexy]

They can also attempt gene therapy, or the mother could have her eggs fertilized outside her body, and then doctors can see which embryo contains the mutation, and then implant the healthy one back to the womb. Dunno what that process calls...

[SourSweetSoul2]

It's called Preimplantation genetic diagnosis (PGD).

and you're right about this and the gene therapy.. Do you possibly have an idea whether it has been done for FFI or not?

:)

[anarky4321]

University of Bologna...lawl

[MyndTrix420]

A Vietnamese guy has been awake for 33 years and it didn't affect his mental abilities..

[bibi5027]

@MyndTrix420 hoax,impossible,try be awake 3 4 days and you will see

[Ronni15]

this scares the fuck out of me.

[moletfrog12]

me 2 :-S

[eleciarenee]

Thank You, I love You, Please Forgive Me, I'm Sorry..I Love You

[raraavis1988]

How scary

[TRIARII117]

what an odd disease...

[fancifelle]

I wonder if I don't have something similar.

[dandamanwitdaplan92]

id rather kill myself then have to live nine months without sleep

[elephant6543]

This is amazing. Thanks for posting. I'm reading the book mentioned.

[jujuman333]

very interesting

[microspect]

Thank you for this video.

[jfmj83]

thankyou so much for posting this video, i missed this on 20/20!