Confronting CJD & other Prion Disoders

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  • Опубликовано: 18 дек 2024

Комментарии • 428

  • @kiwisunshine9631
    @kiwisunshine9631 2 года назад +120

    This video is very interesting. Back in the early 1970's I had HGH injections 3 times a week. I had a pituitary/endocrine problem and was very tiny for my age. (I'm 65 now, Feb 2022) I also had a poor immune system, which meant if I caught a cold or any other infection, I would end up in hospital. This happened very frequently. Sometime in the late 70's I got a huge lump on my backside. It was an abscess from having the HGH injections 3 times a week. The HGH injections were immediately stopped, and I never had them again. Through my constant hospital admissions I got to know another young girl who also had the HGH injections, at the exact same times as I did. I asked her mother if she was ok, and she said no, she has CJD. We kept in touch and sometime later she sent me a letter saying her daughter had passed away. I had seen her go downhill, from being a normal young girl to becoming a vegetable. It was horrible. Around the late 80's to early 90's I received a letter from my (then) Endocrinology Specialist, telling me a bit about how CJD has been found in some HGH recipients, but I had nothing to worry about. A short time later I was visited by a Barrister who was dealing with the legal side of patients who had possibly been exposed to CJD. I was one of those patients. He was the one that said to me was I aware that I should not be a blood donor. Up until that moment I had no idea. I had not donated blood as I did not weigh enough. Things regarding CJD (here In New Zealand) were starting coming out in the media, and I did several interviews for various media, as none of the other HGH recipients here had the courage to speak out publicly. By now I had found out that morgue workers had taken out the pituitary gland of many cadavers, not knowing what they had dies from. The more they collected, the more money they were paid. They processed these to make the HGH. I have a video about it taken from a tv interview I did. It was sickening to know this, and to know that is how CJD was spreading to HGH recipients, not only here in New Zealand, but also around the world. At this time ((90's) I was told by a Professor of Endocrinology (whom I knew and had had dealings with) that CJD had an incubation period of 30 years. I was shocked. Cutting a long story short, I am fine and the 30 year incubation period has been and gone - and I am still alive! My (present) Endocrinologist casually said to me about 10 years ago that it had passed and I was fine. Such a casual throw away comment! I used to go to bed crying at night, praying that I woke up the next morning and did not have CJD. So much of what went on has been swept under the carpet here in New Zealand. Yes, I am perfectly fine now, but sometimes the memory of what I (and others) went through comes back to haunt me. Apologies this is so long, there's so much more I could say. Thanks for reading this! Stay safe everyone🙂

    • @alexneil394
      @alexneil394 2 года назад

      This disease scares the shit out of me. It’s bizarre. An infectious protein ? Whatttttt ?? Weird .. downright scary

    • @wilfredwayne7139
      @wilfredwayne7139 2 года назад +4

      My friends pituitary gland was messed up too but in reverse he was 6'9 at 15.

    • @runningupthathill4887
      @runningupthathill4887 Год назад +5

      thank you sir for sharing this story

    • @somnuswaltz5586
      @somnuswaltz5586 Год назад +1

      Such a selfish story.

    • @carolynncoppingerwilliams1520
      @carolynncoppingerwilliams1520 Год назад +3

      Thank you for making your experiences public. We all know more now.

  • @stephenbrand5661
    @stephenbrand5661 3 года назад +28

    Every time I try to teach myself about CJD and prion diseases in general I'm just blown away by how difficult it is for me to wrap my head around the subject. It really makes me appreciate physicians and researchers and all the other brilliant people who are working on therapies for these terrible diseases.

    • @somnuswaltz5586
      @somnuswaltz5586 2 года назад

      What is so difficult to understand about what is being said in how video? It's not rocket science

    • @stephenbrand5661
      @stephenbrand5661 2 года назад +14

      @@somnuswaltz5586 My comment wasn't about this video in particular but you clearly need to feel intelligent so wow, you seem really smart bro!!

    • @melisentiapheiffer3034
      @melisentiapheiffer3034 Год назад +4

      ​@Stephen Brand I understood what you meant...😊

    • @floseatyard8063
      @floseatyard8063 Год назад

      ​@@somnuswaltz5586 Little shit.

    • @jsphillip60
      @jsphillip60 Год назад

      ​@@somnuswaltz5586Prick.

  • @samibigott3418
    @samibigott3418 9 лет назад +33

    It's good to see that there is work being done for CJD. In 2010 my grandmother passes away from it when I was 15 years old. Watching her go through this and holding her hand every day for 3 months was just heart breaking. she went to florida in April, came back in may and passed july 15th. Thank you so much for putting this up so families like mine could understand more and get the awareness out there. And hopefully find a cure some day. I love you gram. RIP

    • @joshuatraffanstedt2695
      @joshuatraffanstedt2695 6 лет назад +1

      Why wouldnt there be?

    • @SpiDey1500
      @SpiDey1500 5 лет назад

      Anle138b is not a cure, but it could be a game changer got cjd and even Alzheimer

    • @СветланаТрофимова-у2щ
      @СветланаТрофимова-у2щ 4 года назад

      Глупость, против Бкя не чего не поможет

    • @runningupthathill4887
      @runningupthathill4887 Год назад

      @@joshuatraffanstedt2695 prions are misfolded proteins, they're naturally present in our bodies as normal proteins but no one knows how or what makes them trigger to change their 3d structure and turn into a prion, this is the reason why it's not curable

  • @stanbean23
    @stanbean23 10 лет назад +20

    I have just began to study Decontamination Sciences in the sterile services (Surgical instrumentation). My assignment is to look at an outbreak that occurred in sterile service with patients that underwent surgery. Firstly I would like start by saying, this documentary was extremely helpful in providing facts clearly displaying what appears to be a complex disease. From my opinion when discussing CJD that is acquired from dirty surgical tools, after the tools have been used they are sent to the sterilisation department to be cleaned and sterilised for further use. However, in most cases in the UK the risk of CJD is not identified until much later after the initial procedure, meaning the surgical tools have most likely been used on other patients in the meantime. As mentioned in the video, the sterilisation procedures can not completely rid the protein. However, I defiantly think high risk procedures (neurosurgery, brain biopsy etc) the surgical tools should be quarantined until laboratory findings conclude there is no CJD risk. Only then should those tools be aloud back into circulation.

    • @mycosys
      @mycosys 7 лет назад +2

      Much of the world is entirely using disposable surgical tools for high risk procedures

  • @johnc.hammersticks
    @johnc.hammersticks 2 года назад +19

    This is horrific; nobody should have to go through that. Nature can be cruel as much as it can be beautiful

    • @mx4life560
      @mx4life560 Год назад +4

      let's be real It's mainly cruel

    • @lucianaromulus1408
      @lucianaromulus1408 Год назад

      ​@@mx4life560that's untrue. It's an essentially perfect balance of both

    • @lucianaromulus1408
      @lucianaromulus1408 4 месяца назад

      ​@mx4life560 you don't get outside much. Nature is as beautiful as it is cruel. Go watch a sunrise

  • @kamipharis1425
    @kamipharis1425 2 года назад +19

    My mother died from CJD in 1984. I was six months pregnant with her 1st grandchild. We took her to numerous doctors and watched her health rapidly deteriorate. She was finally diagnosed at UCLA medical center with 1 of 5 slow viral infections of the brain. She lasted over a year and finally passed from pneumonia. After agreeing to an optosy we told she had CJD. They had no idea who or when she got it.

    • @heide-raquelfuss5580
      @heide-raquelfuss5580 Год назад

      Vaccines can induce it.
      Eating meat/organs, spine that is infected.
      Blood transfusions.
      Organ transplants.
      Medical instruments not being sterilized when infected ( btw, cooking, sterilizing does not really work either. Even brains and biologic material infected and put in formaldehyde still contain this disease material! ).
      Growth hormones.
      Other products made of biologic material, including fetusses to make products...like vaccines and so on.
      Sexual contact, by fluids, kissing.
      Dental work with contaminated instruments.
      There are many ways to infect animals and people.😢

  • @Johanna040713
    @Johanna040713 5 лет назад +60

    "Ed Cypert died just three months after he retired". It's mind blowing how rapidly that disease can progress. I hope and pray they'll find a cure for prion diseases.

    • @2bertlh1connu43
      @2bertlh1connu43 2 года назад +2

      I'll try to find one, i promise

    • @somnuswaltz5586
      @somnuswaltz5586 2 года назад

      Uhhh ok... most ppl die just months after their symptoms begin. Not sure why that blows your mind

    • @deborahwhitney9427
      @deborahwhitney9427 Год назад

      ​@@somnuswaltz5586Better to die months after be8ng diagnosis rather than suffer for years with a disease like cancer.

    • @somnuswaltz5586
      @somnuswaltz5586 Год назад

      @@deborahwhitney9427 I never said a prolonged death was better bro....

    • @jsphillip60
      @jsphillip60 Год назад

      ​@@deborahwhitney9427that's debatable.

  • @patrickdemarcevol
    @patrickdemarcevol Год назад +13

    My uncle was a veterinary surgeon in the UK. In the mid seventies he started finding these cows that had the mad cow disease, very few at that time but he did the autopsies and survey. The disease exploded in the 80's and humans started getting it. Then 30 years later, he died of a rare form of brain disease that was never diagnosed, all the specialists he saw couldn't tell. There was no further research as my aunt had him cremated she didn't wan't all the hassle and pain of autopsy etc.

    • @ксения-е1ж2т
      @ксения-е1ж2т 6 месяцев назад +1

      Здравствуйте. А какие симпмтомы были у вашего дяди?

    • @somnuswaltz5586
      @somnuswaltz5586 6 месяцев назад

      lol ok yeah nice bullshit story

    • @patrickdemarcevol
      @patrickdemarcevol 6 месяцев назад +2

      What about your bullshit comment then? It's a true and sad story, why do you say this? You think death of a family member is funny?

    • @dancooper6002
      @dancooper6002 14 дней назад

      Very interesting to hear, especially since I've always suspected the government downplayed the BSE vCJD story

  • @michelleoraboni8474
    @michelleoraboni8474 Год назад +12

    Add my brother to this sad, horrendous list of deaths from CJD 3 years ago. He turned 62 on October 9, and spent it on San Francisco Bay fishing with his friends. By November 17, he was gone. It was frighteningly fast, horrendously cruel and scary. He left behind twin daughters, a wife, a brother and sister that miss you so much, and so many friends. RIP Brian. You are loved and missed, and im so sorry this horrible thing happen to you. You deserved better

    • @hollydaugherty2620
      @hollydaugherty2620 7 месяцев назад +1

      Only weeks of being ill! That's horrific. What a nightmare. My mother in law has just been diagnosed after a couple of months of trying to get her some help and a diagnosis. She's now wetting herself, can't eat, etc.

  • @wmd40
    @wmd40 3 года назад +17

    Wow this documentary is awesome. Thanks so much for sharing it. Prion diseases are fascinating and this documentary has so much info

    • @colonycollapse8601
      @colonycollapse8601 3 года назад

      They are fascinating indeed! You should look up some case studies and look up Heidenhain variant cases of CJD if you haven't already, it gets weirder. A terrible disease of course, but you are right it is very interesting.

    • @ingridjocelynab1
      @ingridjocelynab1 3 года назад +2

      They are not fascinating when you have lost 3 loved ones and the fact you may have it as well for contaminated food. They are not fascinating when there is no cure, too much pain

    • @wmd40
      @wmd40 3 года назад +6

      @@ingridjocelynab1 seriously? I'm just saying this is a very interesting documentary. That doesn't mean I don't feel for the people, I do.

    • @colonycollapse8601
      @colonycollapse8601 3 года назад +3

      @@ingridjocelynab1 perhaps you should look up the definition of "fascinating". Just cuz something is fascinating doesn't mean it is awesome or cool or a positive thing. I'm sorry, are we not allowed to be interested in CJD???

    • @СветланаТрофимова-у2щ
      @СветланаТрофимова-у2щ 3 года назад +1

      Самое страшное дерьмо, которое может случится с человеком

  • @DragonArbock
    @DragonArbock Год назад +5

    Was trying to find the source of the footage at 28:12. Could be way off, but narrowed it down to a new york pbs broadcast that no longer exists nor is really documented anywhere but a dead link on the wayback machine. "New York: The State of Education", 1998.

  • @zandemen
    @zandemen Год назад +6

    2:47 a morbid discussion, but this guy sounds so much like a Simpsons character it's hard to take it seriously.
    "You may know me from specials like "How to Pet Sharks", and my even more popular follow-up, "How to Work as an Amputee>""

  • @lulabellegnostic8402
    @lulabellegnostic8402 Год назад +14

    My very dear friend and colleague died of CJD in 2007. He was 37 and a hospital physician. He was born with panhypopituitrism so was dependant on HGH injections. Aged 18 he was accepted into medical school. Within a few months he received a letter from the DoH informing him that he was at risk of CJD because others who had received the same pooled batch had become infected. Imagine that. Not only living with a likely death sentence, but having intimate knowledge of how you will die and questioning every twitch or stumble.

    • @Arbiteroflife
      @Arbiteroflife Год назад

      He lived a long time with CJD then. I see most people who get it are gone within a year.

    • @stevengill1736
      @stevengill1736 Год назад

      So sorry to hear that!!
      Don't they have synthetic HGH by now? All those blood extracts and things like HGH should be screened somehow, but how?

    • @Stewf85
      @Stewf85 9 месяцев назад

      ⁠@@Arbiteroflife theres a difference between carrying disease & the disease developing/activating, but you’re correct that people have an extremely short life span once symptoms start developing.Such a cruel disease

  • @tobyihli9470
    @tobyihli9470 Год назад +9

    I’m still shocked that this doctor received the Nobel Prize when two other men, Authur Carey who spent decades living with and studying the Fore tribe in Papua New Guinea, in which the disease was so prevalent, and Carleton Gajdusek, are the discoverers of the disease. It was caused by the cannibalistic practices, specifically the eating of infected brains. They even went so far as to injecting infected brain matter into otherwise healthy chimps, who later developed the disease. All the Nobel Prize winner did was label the disease. So unfair, especially to Authur.

    • @somnuswaltz5586
      @somnuswaltz5586 Год назад

      I agree. Prusiner don't deserve the award, he didn't discover or realize the disease

    • @stellarwind1946
      @stellarwind1946 2 месяца назад +3

      You are mistaken. Gajdusek was indeed the first to demonstrate the transmissibility of the disease, for which he won the 1976 Nobel Prize.
      Prusiner was the one that identified the molecular origin of the disease (misfolding of the PrP protein), for which he won the ‘97 Nobel.

  • @svinjamaria
    @svinjamaria 5 лет назад +33

    How is it that I’m so interested and invested in a topic so much, but doing so is literally making me sob the entire time

    • @svinjamaria
      @svinjamaria 3 года назад +4

      @Pol Pot same goes for you lol

    • @svinjamaria
      @svinjamaria 3 года назад +4

      @Pol Pot who shit in your cereal, man

    • @СветланаТрофимова-у2щ
      @СветланаТрофимова-у2щ 3 года назад +2

      Where did you get it, maybe she was really upset, prions are scary and creepy

    • @RLTW2003
      @RLTW2003 3 года назад

      @@svinjamaria my cereal is shit free!

    • @somnuswaltz5586
      @somnuswaltz5586 3 года назад

      @@svinjamaria why is it I am so interested in prion diseases, yet every time I see your comment I literally CRINGE??? Seriously, delete your ignorant comment PLZ. You're making it all about YOURSELF and not about the diseases or their victims. You're just making yourself the center of attention and the victim

  • @nelsonmcclure141
    @nelsonmcclure141 5 лет назад +7

    My father passed away in 1999 from this Disease. In Kansas... first symptom was Oct 31 , passed away Dec 6 ... 64 yrs old.

  • @mjallen1308
    @mjallen1308 Год назад +4

    8:44 I can’t tell whether to feel sadness or smile a bit at this joke he makes with his wife. I can’t tell if it’s an actual joke or a testament to how progressive the disease is. I can’t tell if hes suffering symptoms in that moment or if he’s really just trying to make light of a situation he knows is continuously worsening.

  • @StarDeSoul
    @StarDeSoul 8 лет назад +17

    I had a genetic test done for research and it came back with 35 variants linked to Prion Disease, including 2 mutations of the Prion protein gene (one is PRP129Homozygote). I can't convince my doctors to take the test seriously! I was possibly exposed to BSE in England 1988-1991. I'm already diagnosed with Ehlers-Danlos Syndrome. How can I get help if my doctor won't order a test to confirm my mutations for a diagnosis? I'm supposed to go in for Colonoscopy/endoscopy checking for Crohn's in 2 weeks and they said it's not transmissible, but I don't think they really know!

    • @ACIMessentials
      @ACIMessentials 8 лет назад +4

      I think there is an online CJD group you can ask for help. Perhaps someone there will go to bat for you.

    • @Wes8761
      @Wes8761 7 лет назад +1

      how did it go

    • @tromboneJTS
      @tromboneJTS 5 лет назад +5

      The genetic form is not caused by diet. I think they said the 129 polymorphism only defines disease phenotype, but only if you carry a second mutation for the disease.

    • @oldtwinsna8347
      @oldtwinsna8347 5 лет назад +5

      You need to see a specialist who understands these things. Most family doctors are not very kept up with the times as they rely on pharmaceutical companies for their continuing education and guess what, there are no medicines for prions.

    • @TheBigwheels11
      @TheBigwheels11 4 года назад +1

      This is socialized medicine at its finest. Idiots here in the US want “free healthcare for everyone”. I’m sorry you are going thru this. It’s sad when an insurance company dictates what test should be done.

  • @chadgibson2689
    @chadgibson2689 2 года назад +7

    My Grandmother passed away from this. It is a cruel ruthless disease.

  • @TaTa-xd5yt
    @TaTa-xd5yt Год назад +6

    How quickly the man in interview died... only 5 days. He didn't seem too bad at this stage. What must have happened to him? Makes me think that he may have ended his life, which is what I would do too if I got this disease.

    • @floseatyard8063
      @floseatyard8063 Год назад +4

      No, the disease really just kills you that quick after symptoms

  • @emily-clark
    @emily-clark 2 года назад +12

    Stanley Prusiner received the Nobel prize for the discovery of prions in 1997!?? This always really bothered me because in 1967, J. S. Grittith had already discovered this but it was a theory. He did publish it but it was ignored by the scientific community. J. S. Grittith was soo advanced, it was unbelievable, unreal! What a brilliant mathematician!

    • @C.O._Jones
      @C.O._Jones Год назад

      Why does it bother you? Griffith hypothesized proteins as the cause, but he had no proof, and at the time no way to prove it. Prusiner proved it. Therefore, he is the discoverer.

    • @somnuswaltz5586
      @somnuswaltz5586 Год назад

      Lol relax.... you only get the Nobel if you CONFIRM or cure something, not just theorize how a protein might work 😂

    • @emily-clark
      @emily-clark Год назад +1

      @@somnuswaltz5586 Uh huh, well, what about Sir Alexander Fleming who discovered Penicillin in 1928 but because the British wouldn't fund his research, he had to share the Nobel Prize in Physiology & Medicine in 1945 with 2 Americans, Howard Florey and Ernst Chain just because of the money. The list goes on...

    • @jsphillip60
      @jsphillip60 Год назад

      ​@@emily-clarkWhat about Whataboutism?

    • @stellarwind1946
      @stellarwind1946 2 месяца назад

      Griffith was the first to propose the hypothetical molecular basis for the disease, but he did not identify the specific protein implicated in TSEs. Prusiner was the first to identify the PrP protein present in all TSE cases.

  • @heatherAnnwithE
    @heatherAnnwithE Год назад +6

    The Eugentics Program working exactly as they hoped.

  • @selenerojas9312
    @selenerojas9312 4 года назад +4

    At 27:58 , Does anyone know the name of the talented Teacher in the Broadcast that got CJD later? Cuz i am interested in that man and it makes me said that that teacher died to CJD.

    • @kurtventrella9692
      @kurtventrella9692 3 года назад

      I’ve been wondering who he is too. I can’t find anything on him. I hope his family and loved ones are doing well

    • @hankhill5278
      @hankhill5278 3 года назад

      If he got cjd then %100 that person is dead already. No one has ever survived this disease ever. No cure or treatment

    • @haloskaterkid
      @haloskaterkid 3 года назад

      @@hankhill5278 no one asked if they were alive? Lmfao

  • @christopherrowan3886
    @christopherrowan3886 8 лет назад +37

    Wow, poor Tom in my opinion had it very lucky by dying only 5 days after the interview in which he was almost fully coherent, in possession of his faculties and looking so well. Maybe he died of other causes, but the thought of being made to see this fuckibg horrible disease from start to finish horrifies me. Twelve months is the average lifespan of a person with CJD.
    Too terrible for words.

    • @СветланаТрофимова-у2щ
      @СветланаТрофимова-у2щ 4 года назад +2

      Да, это болезнь убивает за дни

    • @СветланаТрофимова-у2щ
      @СветланаТрофимова-у2щ 3 года назад +1

      This shit kills fast, the brain decomposes, it's terrible, but death in 2.3 months, as prions kill, is too muc

    • @twindrill2852
      @twindrill2852 2 года назад +1

      It also could be that he tried to off himself before the symptoms got unbearable , I’m not sure if CJD progresses THAT fast.

    • @Back.sh0ts
      @Back.sh0ts Год назад +3

      ​​@@twindrill2852 avg lifespan for someone with cjd is about a year, id honestly off myself as well if that was the case

  • @janetlively9633
    @janetlively9633 4 года назад +4

    My husband have CJD .praying have cure in the future

    • @AshleySarah01
      @AshleySarah01 3 года назад

      @@soul-mate.manifestaion123 I am interested!

    • @soul-mate.manifestaion123
      @soul-mate.manifestaion123 3 года назад

      @@AshleySarah01 ok use the contact

    • @AshleySarah01
      @AshleySarah01 3 года назад

      @@soul-mate.manifestaion123 your comment is gone, i cannot even see what you write or the contact info now

    • @AshleySarah01
      @AshleySarah01 3 года назад

      @@soul-mate.manifestaion123 the contact is gone

    • @soul-mate.manifestaion123
      @soul-mate.manifestaion123 3 года назад

      @@AshleySarah01 check your email address

  • @usmcscout0311
    @usmcscout0311 7 лет назад +7

    Do you think chronic wasting disease from deer can cause cjd in humans?

    • @Wes8761
      @Wes8761 7 лет назад +8

      Nobody knows at this point but I think it is a possibility

    • @lulumede128
      @lulumede128 7 лет назад +8

      yes. the stats state that most people dying or have died of cjd have a history of eating deer mutton venison etc. They state "sporadic" but they just did some findings that sporadic cjd is actually the tse form because the government wants to cover it up !

    • @Wes8761
      @Wes8761 7 лет назад +6

      Leah Medved You honestly are a cancer you do not know nor care about the science and all you do is blab about your cover up bullshit

    • @lulumede128
      @lulumede128 7 лет назад +3

      Wes8761 yeah? tell me what you know then lol I work in health care and have seen people dying of this. my friends mom died from this too. the government doesn't want mass hysteria of telling people the food they eat is causing this look at how much they kept from us already . keep believing the lies and keep eating your "safe" meat

    • @lulumede128
      @lulumede128 7 лет назад

      what did they do with the downer cows then if you know everything

  • @erpthompsonqueen9130
    @erpthompsonqueen9130 Год назад +6

    Thank you. My family is going through this right now.

  • @lonewolf1369
    @lonewolf1369 11 лет назад +7

    I believe British scientists have now developed a blood test that is pretty accurate in detecting CJD.

    • @AshleySarah01
      @AshleySarah01 3 года назад

      If so plz comment here. America they said no test available

    • @nekilof-2363
      @nekilof-2363 3 года назад +3

      CJD can only be conclusively diagnosed by examining the brain of a deceased person, just like you can't conclusively diagnose rabies without studying the brain of a deceased animal.

  • @bouharmadjamila6240
    @bouharmadjamila6240 28 дней назад

    Plz I want to ask a question ❓ one of my family members had CJD disease...just One month she enters to Coma ? My question is is it the final stage of this disease or is it normal because as I know the ❤ year with this disease (now she has 3 months with it ) ?

  • @Beesa10
    @Beesa10 9 месяцев назад

    Why is CWD (deer) so transmissible /infectious compared with other TSE diseases?

  • @somnuswaltz5586
    @somnuswaltz5586 Год назад +2

    I always wonder what exactly Tom died from. Ive searched online but can't find any info on Tom or his daughter

  • @yoandigomez-bb1mr
    @yoandigomez-bb1mr Год назад +1

    was cadaver hormone banned in China too ? Or did they keep making it

  • @shellbacksclub
    @shellbacksclub 9 месяцев назад

    Today there is a specialized test to verify it, but it's unavailable locally. It takes too long to get the diagnosis.

  • @musicspinner
    @musicspinner 8 лет назад +4

    Very helpful video -- thank you.

  • @lgreen2475
    @lgreen2475 Год назад +2

    Patient zero. It appeared spontaneously out of nothing and nowhere. Like the big bang. For me, kinda blows me away.

  • @shellbacksclub
    @shellbacksclub 9 месяцев назад

    How does it start within a family?

  • @bartoszkrawczyk6204
    @bartoszkrawczyk6204 10 лет назад +8

    This vid helped me lots in my school project!

    • @sternmccrays8058
      @sternmccrays8058 9 лет назад

      +Bartosz krawczyk ur ssschool project suks. mmm fak u

    • @kevinpham5507
      @kevinpham5507 9 лет назад +1

      +Stern McCrays Please speak english.

    • @kouta43210
      @kouta43210 2 года назад

      What's a "vid"?

    • @LeoLyricLab
      @LeoLyricLab 29 дней назад

      ​@@kouta43210 abbreviation of video (2 yrs later, sorry)

  • @eeriejig1522
    @eeriejig1522 3 года назад +6

    The most dreadful disease of all!

  • @Twistingmymelon
    @Twistingmymelon 2 месяца назад

    5:54 vcjd if anyone is wondering

  • @lorrainekeech1250
    @lorrainekeech1250 8 лет назад +15

    Not even a mention of GSS, a genetic form or prion disease that has virtually wiped out my family.

    • @judith8161
      @judith8161 5 лет назад +5

      @Blood Beryl What are you even talking about? Do you know this person, did she break up with you, steal your bf or what makes you call her names?

    • @baruchben-david4196
      @baruchben-david4196 5 лет назад +6

      Well, they're talking about CJD, not GSS.

    • @СветланаТрофимова-у2щ
      @СветланаТрофимова-у2щ 4 года назад

      Все таки ГСС это не бкя, не такое катастрофичное, там можно пожить лет 5 или более

    • @vapingcat1885
      @vapingcat1885 3 года назад +5

      They do briefly talk about it at 26:27 tho

    • @VLKYRII
      @VLKYRII 2 года назад +5

      They did mention GSS, later in the video talking about the genetic code

  • @janecarig4527
    @janecarig4527 4 года назад +5

    this is giving me anxiety...this horrifying omg....

    • @СветланаТрофимова-у2щ
      @СветланаТрофимова-у2щ 4 года назад +1

      Самое страшное заболевание

    • @nekilof-2363
      @nekilof-2363 3 года назад

      Yes, and unfortunately some forms of CJD are inherited and others are acquired - meaning that if you ate beef that was contaminated with the cow spongiform (aka mad cow disease) version or potentially meat from chronic wasting disease wild game (but there's not conclusive evidence of this yet) you could eventually develop CJD.

  • @СветланаТрофимова-у2щ

    Не когда, мы не чего не сможем против прионов, это самое жуткое заболевании, это смерть

  • @kathrynmilligan8839
    @kathrynmilligan8839 6 месяцев назад

    5 years ago Buffalo General dxmy friend patty 60 years old. She was a mom who cared for b her son who went MIT with muscular dystrophy he was full care. Quickly got lost finally d x. Passed away

  • @justjohnny05
    @justjohnny05 8 лет назад +14

    I have been struggling with CJD for over toen years now my family seems to have a hereditrary ferversion sorry fo my typing i wont correct it so you can see how typing errosr happen now my uncle who had symptoms for over 10 years before he pased away the autopsy found Prions and his cause of death wsa cjd my grandmother just passed away and she had symptoms too my condition is steadly getting worsee I have tried some treatments of my own based on some epxeiments with rats and they seemed to heelp alot but ultimately the illness is winning. My docs here in los angeles know nothing and cant help they originally told me both my gp and nreuroloist that I either have "something so rare they have never had any experience with it or its unknown to medicine" that is when i asked my mom about my uncles death because I knew it was somwthng very rare when i found out his symptoms were very much like mine I figured it must be cjd thats when I found that theris a hereditary version. its only me and my mom left now and heshe too has the same early symptoms my grandma her mom had.

    • @JohnLockers
      @JohnLockers 8 лет назад +1

      Do you mean you have you had symptoms for over 10 years?

    • @justjohnny05
      @justjohnny05 8 лет назад +2

      yes since 2002 but i suspect there were symptoms as early as late 90's but now its getting much worse with blackouts almost daily

    • @JohnLockers
      @JohnLockers 8 лет назад +11

      Do you have other conditions that you're maybe talking about? From my studies of the disease, the symptom phase doesn't last that long.

    • @justjohnny05
      @justjohnny05 8 лет назад +4

      no no other conditions most people think that but if you look into the herediary versions 10 or more years is not uncomon and the longest on record is 20 yearx yes i have lived wit this every day for years and I know what im talking about i watched two relatives die of it with same symptoms as me and the autopsy was cjd prions

    • @JohnLockers
      @JohnLockers 8 лет назад +1

      justjohnny05 Wow, well good luck in your fight. How are you holding up now?

  • @lizichell2
    @lizichell2 Год назад +2

    In FLAIR their brains light up like Oxford Street Christmas lights

  • @ruthmusser4449
    @ruthmusser4449 Год назад +2

    This reminds me of Kuru in New Guinea. But these symptoms were caused by undercooked humans.

    • @LeoLyricLab
      @LeoLyricLab 29 дней назад

      No, the kuru was also a prison desise, and you are right, it was cannibalism the cause, but cocking was not the problem, cooking meat doesn't kill it unfortunately, or all the CJD despise wouldn't be a thing

  • @paxetbonum4934
    @paxetbonum4934 4 года назад +3

    Is it genetic or have these people eaten contaminated food?

    • @СветланаТрофимова-у2щ
      @СветланаТрофимова-у2щ 4 года назад

      Оно бывает и спориодическое, вот что страшно

    • @alexh4935
      @alexh4935 3 года назад +2

      As it explains in the video, it can be either. Some people inherent a gene for the malfunctioning protein. Some people can spontaneously have a mutation that causes it even without family history. Some people got the “variant” version from food. The protein enters the brain from the digestive system and causes increasing damage. The different types have some symptoms in common, but will look different in their early stages.

    • @General_shit_sound_effect
      @General_shit_sound_effect Год назад

      It can be both or sometimes, it just happens

  • @rcfrogman
    @rcfrogman 8 лет назад +5

    X-Files brought me here.

    • @Wes8761
      @Wes8761 7 лет назад +5

      Is there a reference?

    • @paulflint6254
      @paulflint6254 6 лет назад +1

      good episode, the one with the chickens

  • @shellbacksclub
    @shellbacksclub 9 месяцев назад +2

    So wish they would've discovered this earlier in my uncle. Instead he had to spend the Christmas season & beyond in the hospital with no answers & then when he was finally given the diagnosis he got to go home & died 3 days ago there. I don't believe this is a 1 in a million disease bcuz my uncle was a 1 in a million special man. We just had a surprise 60th Birthday for him... & Now this & gone?! There needs to be more research & more done!

  • @paulflint6254
    @paulflint6254 Год назад +1

    Are visual hallucinations and memory loss part of this cos Im getting symptoms of this.

    • @somnuswaltz5586
      @somnuswaltz5586 Год назад +4

      No dumazz... if you have to ask if you have CJD, then chances are you don't have it. I think you'll be alright 👍

    • @immanuelsteven7704
      @immanuelsteven7704 2 месяца назад

      any updates on you ?

  • @lonewolf1369
    @lonewolf1369 11 лет назад +18

    you can absolutely become infected from someone else. Blood contact is one way, whether through contaminated medical/dental instruments, or sexual contact.

    • @lonewolf1369
      @lonewolf1369 11 лет назад +5

      People who have CJD can't donate blood. Those who were in UK in the mid 1990s also can't give blood. This is because CJD prions infect the blood. Sexual contact can transmit blood and thus CJD also.

    • @sel0520
      @sel0520 10 лет назад +6

      CJD can remain dormant for 25 years, then kills in 4 months. You do not know you are carrying it while you are a blood donor all those years.

    • @lonewolf1369
      @lonewolf1369 10 лет назад +3

      Exactly. And the new blood test isn't available for general use, only from doctor's request after showing symptoms. Already people have been infected with contaminated surgical instruments at hospitals. Dentists, hospitals, don't know or have the special sanitization equipment to destroy the prions. The world is just lazy and too stupid to catch up with latest findings.

    • @lizichell2
      @lizichell2 10 лет назад +6

      You cannot get prion diseases from sexual contact

    • @lonewolf1369
      @lonewolf1369 10 лет назад +4

      Yes you can because it's transmitted in blood. There is also tiny amount of blood in saliva, and TSE can be infectious with as much as a fingernail's amount.

  • @paulflint6254
    @paulflint6254 6 лет назад +4

    vcjd is MV now too. great vid btw

    • @CarolineLockMusic
      @CarolineLockMusic 5 лет назад +3

      Blood Beryl Not a helpful thing to say - certainly not when it’s true. Grant Goodwin, a Scot who died of variant CJD in 2009, had the MV genotype. His case was scrubbed from official government statements in the UK because nobody wanted to accept that the more common genotype could be affected. Not a surprising response from the government who knew about the potential risks of BSE jumping species into humans for years before people started dying because profit was deemed more important than people.

    • @lizichell2
      @lizichell2 3 года назад

      @@CarolineLockMusic Blood beryl is a complete idiot

  • @tromboneJTS
    @tromboneJTS 5 лет назад +1

    At 27:48 •••••GREAT HAIR!!!••••••

  • @yeshuapleaseprotectthechil2150
    @yeshuapleaseprotectthechil2150 3 года назад +6

    From what is verboten to say on Utubby; the jab.

    • @honorafox4709
      @honorafox4709 3 года назад +3

      YES!! EXACTLY!! Thank you for saying this! More NEED to know!

    • @jennyjen7000
      @jennyjen7000 3 года назад +2

      Exactly why I'm here too.

    • @fjordpitsky4486
      @fjordpitsky4486 10 месяцев назад

      I guess it was responsible for all the cases in the 90s and 2000s too.

  • @lonewolf1369
    @lonewolf1369 11 лет назад +11

    I find it disturbing that nowhere is it mentioned on how to help reduce the risk and chances of getting vCJD. It's blatantly obvious one should avoid consuming all animal products as most countries have no, if not pitiful prion monitoring in their animal food supply. Prions can also infect dairy products since there is blood in dairy. Most people love eating animal products too much to do the safe thing for their health to avoid them. It's taboo but it's true.

    • @lonewolf1369
      @lonewolf1369 11 лет назад +5

      The graph showing BSE explosion juxtaposed with vCJD incidence in the video is crystal clear evidence that vCJD is transmitted through contaminated animal food. The correlation between the two graphs in their corresponding peaks and troughs is obvious. But to confront people's dietary lifestyle and the animal food industry is unacceptable to most.

    • @sel0520
      @sel0520 10 лет назад +10

      My sister died 4 yrs ago, after 4 months from CJD in the US. She was entirely a vegetarian. The ground up tainted livestock has been fed to other animals....put into fish food for farmed fish, and added to many other products. One thing most victims have in common is they work with food, in kitchens, preparation, meat cutters, and farmers, and hunters. My sister had none of these in common.

    • @lonewolf1369
      @lonewolf1369 10 лет назад

      I'm sorry to hear about your sister. Did she eat chicken, eggs, or dairy? These can also be contaminated. Did she get a blood transfusion? Either way the chances are dramatically lower if one avoids animal products.

    • @sel0520
      @sel0520 10 лет назад +4

      she did eat yogurt and eggs, no chicken, but fish sandwiches often....NO transfusions

    • @lonewolf1369
      @lonewolf1369 10 лет назад +2

      May have been the fish, as farmed fish is fed ground up beef as you mentioned. Also in 2012 they detected a dairy cow with BSE in California, look it up. Dairy can be infectious as it contains blood. Either way, becoming a vegan is a must if one wants to avoid TSE.

  • @somnuswaltz5586
    @somnuswaltz5586 Год назад +5

    This horrible disease only seems to happen to the nicest of people. Its a shame, cuz its the the disease i would ONLY wish on those i hate the most.

  • @nickmoore9643
    @nickmoore9643 21 день назад

    This was written for the crowd that watches PBS, this would go over the most of the heads of Trump supporters.

    • @DoukNoukum
      @DoukNoukum 19 дней назад

      Daily reminder you lost 😂

  • @RoxanneWolfy
    @RoxanneWolfy 6 месяцев назад

    And maybe thats why there are more clusters because think about it how many people have gotten a uti or respiratory infection and went to a doctor to get medication

  • @sharusaravanan3553
    @sharusaravanan3553 5 лет назад

    Any Medicine for CJD? Any One recover from this Dieses? Please answer any one know....Coz my aunt have CJD she’s in the hospital😢

    • @baruchben-david4196
      @baruchben-david4196 5 лет назад +1

      Sadly, at the moment we have no cure for CJD. Not even any treatment.

    • @dvorakhh6269
      @dvorakhh6269 5 лет назад +1

      so sorry like all the prions desease there is no cure at the moment

    • @SpiDey1500
      @SpiDey1500 5 лет назад

      Anle138b could help... But a cure? No, there is none. Maybe in ten years...

    • @oldtwinsna8347
      @oldtwinsna8347 5 лет назад

      No cure, not even close. We still are far behind understanding how prions work compared to our understanding of virus and bacterias.

    • @СветланаТрофимова-у2щ
      @СветланаТрофимова-у2щ 4 года назад

      Ужасссссм

  • @lizichell2
    @lizichell2 Год назад +1

    A most indignant malady

  • @shellbacksclub
    @shellbacksclub 6 месяцев назад +1

    Sporadic is not a good enough result!

  • @mitch19636
    @mitch19636 9 лет назад +7

    Sad disease.

    • @sternmccrays8058
      @sternmccrays8058 9 лет назад

      +Mitchell McCreath Why? This is a really cool disease. I hope I get it. You're just jealous. Smh.

    • @mitch19636
      @mitch19636 6 лет назад +5

      What a fucking horrible thing to say.
      Where are your morals. It's a death sentence.

    • @monii7461
      @monii7461 6 лет назад

      @@mitch19636 ikr

    • @paxetbonum4934
      @paxetbonum4934 4 года назад

      Hate to see anyone suffer. This disease is really tough to handle. Not sure if it is contagious.

    • @СветланаТрофимова-у2щ
      @СветланаТрофимова-у2щ 4 года назад

      Ужасная

  • @TheManOfRash
    @TheManOfRash 9 лет назад +1

    The thumbnail guy looks like Harrison Ford

    • @lizichell2
      @lizichell2 9 лет назад

      Blood Beryl whoah! bit of an overreaction.

    • @kevinpham5507
      @kevinpham5507 9 лет назад

      +Blood Beryl calm down blood scrub

    • @MaX1MuS2k7
      @MaX1MuS2k7 8 лет назад

      +Blood Beryl G You've got CJD, severe temper tantrums are a common denominator with this disease along with change of personality and mood swings

    • @daenaryxIG
      @daenaryxIG 8 лет назад

      +MaX1MuS2k7 wrong tantrums arnt from CJD mood swings however are

    • @MaX1MuS2k7
      @MaX1MuS2k7 8 лет назад

      +Chris Duncan Whose to say that temper tantrums are not a sub-syptom of a mood swing, or even still, more or less the same thing? Stop trying to be a smartass for the sake of it

  • @stefanostokatlidis4861
    @stefanostokatlidis4861 7 лет назад +5

    Why kuru and cjd have different names? If kuru started from someone with sporadic cjd, then it is just another variant of cjd. Is this a racist description? Do so called primitives/cannibals get kuru, and westerners get the scientifically-sounding cjd?

    • @Wes8761
      @Wes8761 7 лет назад +9

      Well it mutated and stared to attack the cerebellum instead of directly attacking the cortex Please Respond if you have any other questions

    • @rickiesee8666
      @rickiesee8666 6 лет назад +2

      stefanos tokatlidis - has it ever occurred to you that the native
      islanders may have gave it the name “Kuru”?

    • @joshuatraffanstedt2695
      @joshuatraffanstedt2695 6 лет назад +2

      @Uintabri where do you think familial cjd came from? It started by cannibalism in humans. Same with Fatal Familial Insomnia. Notice a few of the survivors early in the video had taken care of a relative? The man watched his daughter die of CJD and then also got diagnosed with the same disease?

    • @TheBigwheels11
      @TheBigwheels11 4 года назад +4

      Because they are 2 different diseases....the hour long video went thru the variations.....you don’t care though, people who have lost family members are on this thread and you are worried about ethnicity prejudices

    • @AshleySarah01
      @AshleySarah01 3 года назад

      It has to ALWAYS be about race! When are you all going to learn that no one cares about the color if your skin?! The government is the one dictating our hate for each other! Get a clue and be on the same sides!

  • @KimberlyMyers-s3f
    @KimberlyMyers-s3f 3 месяца назад

    Johnson Jose Brown Sharon Hall Elizabeth

  • @rnalienbbottdrop9713
    @rnalienbbottdrop9713 3 года назад

    i read about prions in a book published before 1950.

  • @mabelsue123
    @mabelsue123 5 лет назад +5

    Wow. I’m lost in all this hardcore science talk.

    • @robinwarren6924
      @robinwarren6924 5 лет назад +5

      Write down every word you can't understand then Google them

    • @CarolineLockMusic
      @CarolineLockMusic 5 лет назад +2

      If you want anything explained, I will gladly help.

    • @kouta43210
      @kouta43210 2 года назад

      @@CarolineLockMusic lol

  • @karenholmes2764
    @karenholmes2764 5 лет назад +2

    When I was a dental hygienist, it was my responsibility to take medical histories and then counsel patients on their dental issues, and I started to notice a correlation between the disease and the circumstances in the person's life--what you believe is what is--in other words. Prion disease correlates to how genocides devolve, including character defamation. There is a connection, and by understanding the correlation, it is possible to find a cure.

    • @CarolineLockMusic
      @CarolineLockMusic 5 лет назад +8

      That’s not even close to how prion diseases work.

    • @karenholmes2764
      @karenholmes2764 5 лет назад

      @@CarolineLockMusic Do you work for the foundation? How do you know how prion diseases work? I am the founder of a nonprofit organization that is working to introduce a protocol for ending genocides, and prion disease is one of the issues we must address. It is how prion disease works.

    • @karenholmes2764
      @karenholmes2764 5 лет назад

      How about CWD in deer? How do they get it? Possibly from grazing on the sites of battlefields. Traumatic events leaves tears in the energy fabric of the region and they last long after the event has been forgotten. Rifts leave a sense of helplessness and hopelessness in the population.

    • @CarolineLockMusic
      @CarolineLockMusic 5 лет назад +11

      ​@Karen Holmes No, but I have the ability to read and understand case studies and scientific data from the people who study prions for a living. Prion diseases and genocide have no connection whatsoever, you have to remember that correlation doesn't imply causation. Prion diseases have killed people from all walks of life - young and old, rich and poor, urban and rural, veggies and meat eaters. They occur when a malformed protein - the "prion" - begins to replicate within the brain and starts destroying brain tissue. They're usually sporadic, but can be inherited or acquired either through consuming infected material (I remember the BSE outbreak and then the subsequent vCJD outbreak) or from surgical procedures where tools infected with prions are used (dura mater grafts or even blood transfusions - look up Mark Buckland, received a blood transfusion in 1997 from a donor who later died of CJD, Mark himself then went onto develop CJD). They're nothing to do with battlefields or trauma. Trauma doesn't cause proteins to misfold en masse. If they did, CJD or indeed any disease caused by prions would be far more common.
      I agree that prion diseases are an issue that must be addressed, we still don't know what causes the sporadic misfolding that leads to CJD or SFI after all, only that certain members of the population are more vulnerable than others - people who are homozygous for methionine at codon 129 of the PRNP gene made seem to be over-represented in terms of variant CJD at least. We don't yet know how to cure it and treatments like quinacrine or a direct infusion of Pentosan Polysulphate (PPS) are either so toxic to the body that you instead die of liver failure or the delays in diagnosis and the sheer speed of destruction mean treatment is administered once you've passed the point of critical degeneration and only a small amount of function can be recovered (Jonathan Simms, for example, far exceeded the normal outlook for vCJD patients with a PPS infusion but he still remained comatose and largely unaware of his surroundings). Prompt diagnosis of these diseases still remains elusive because they're so rare. People are usually diagnosed during autopsy because most doctors will never see a case of prion disease in their lifetime and don't know what to look for. That and the differential diagnoses for these diseases are almost infinitesimal.
      I think the work you're doing is admirable but your statements are not based in fact. Knowledge is power and knowing how prion diseases work is crucial in the fight against them. Speculation can be helpful but presenting speculation as fact is dangerous.

    • @СветланаТрофимова-у2щ
      @СветланаТрофимова-у2щ 3 года назад +1

      Боже, твой собственный белок просто берет и уничтожает тебя, очень жестоко

  • @FieldHugh-b4y
    @FieldHugh-b4y 3 месяца назад

    Harris Jennifer Jackson Gary Moore Thomas

  • @shellbacksclub
    @shellbacksclub 9 месяцев назад

    I don't believe in sporadic cjd!

    • @r.xkiiwa2171
      @r.xkiiwa2171 5 месяцев назад +1

      Fym

    • @LeoLyricLab
      @LeoLyricLab 29 дней назад

      ​@@r.xkiiwa2171 I heard of people who do believe that vaccines were ever a thing so...

  • @budwhite9591
    @budwhite9591 3 года назад +2

    He doesn’t have cjd. He went to penn state

  • @michaelpagan3914
    @michaelpagan3914 6 месяцев назад

    Cows eat grass.

  • @Prophet_Google
    @Prophet_Google 5 лет назад +1

    😍
    👕👍 *12/07/19: No cure for vCJD... no one has survived who had the disease* 🌹
    👖

  • @littleninja6040
    @littleninja6040 8 лет назад +12

    don't eat corpses

  • @anonymousvapes8026
    @anonymousvapes8026 6 лет назад +5

    Trace it to a vaccine or medication.

  • @maxalberts2003
    @maxalberts2003 3 года назад +5

    Stop. Eating. Meat.

  • @budwhite9591
    @budwhite9591 3 года назад +2

    Well If liberals change X and Y chromosomes at will then why can’t they change this? Lol

    • @AshleySarah01
      @AshleySarah01 3 года назад

      Trust me, with the jab they ARE changing this so we ALL get it!

    • @VeganV5912
      @VeganV5912 3 года назад +2

      @@AshleySarah01 , 🦍 never brush their teeth, and they are clean, and they are plant based. Never eat animals. And they’re huge !! 99% the same as us. But we eat meat, et cetera, and have plaque and tooth decay 🧟‍♂️🦠🍖🍳.... go to the dentist twice a year !!! No fibre if you eat animals and their secretions. We’ve got flat teeth. Little flat teeth. Moving left and right -_ 😬. We are herbivores. We choose to be meat eaters, and get cancer and heart attack and high blood pressure and diabetes... 51% death rate if you eat animals and their secretions !!! Scientific fact.
      PH is different. I don’t stink anymore because I’m plant based. Don’t need to go to the dentist because I haven’t got plaque. 6 years vegan, smooth arteries and my shoes and socks and armpits are absolutely clean and fresh. Fibre is plants and fruit and nuts and berries and tubers. Try it for a month you’ll see. And I’ve gotten bigger and stronger and fitter on a plant based diet. Vegans have 4% cancer, and that’s it. Peer reviewed science..

    • @fjordpitsky4486
      @fjordpitsky4486 10 месяцев назад

      ​@@VeganV5912 Also ever considered vegans account for fewer cancer cases because they account for an extremely minute portion of the general global populus?

    • @VeganV5912
      @VeganV5912 10 месяцев назад

      @@fjordpitsky4486

    • @VeganV5912
      @VeganV5912 10 месяцев назад

      @@fjordpitsky4486 ruclips.net/video/jJg5N8a_dQM/видео.html

  • @timblock3483
    @timblock3483 2 года назад

    Beware of spoiled/undercooked meat.

    • @somnuswaltz5586
      @somnuswaltz5586 2 года назад +7

      lol no. That has nothing to do with this topic

    • @progect3548
      @progect3548 Год назад +1

      @@somnuswaltz5586 yes it does.
      old meat can get prions

    • @somnuswaltz5586
      @somnuswaltz5586 Год назад

      @@progect3548 wrong AZZHOLE. Prions don't just come out of nowhere

    • @TaTa-xd5yt
      @TaTa-xd5yt Год назад

      @@progect3548 Old like an old animal or meat that has been in a freezer for some time?

    • @progect3548
      @progect3548 Год назад +1

      @@TaTa-xd5yt old animal