A Matter of Time - living with familial CJD

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  • čas přidán 12. 02. 2017

Komentáře • 81

  • @bigbadbruins1
    @bigbadbruins1 Před 9 měsíci +3

    My mom died from CJD. She went to her primary and he said it’s a stroke so he sent her to a rehabilitation office. One of the doctors said this is not a stroke. I have seen 1 case years ago and I guarantee you it CJD. we never heard of it.Thank god she went quick

  • @monicapagoto1483
    @monicapagoto1483 Před 6 lety +30

    I have a loved one with CJD. He was diagnosed two days ago. He just went on hospice today. Very hard to accept

    • @propagandazombie5252
      @propagandazombie5252 Před 6 lety +2

      Monica Pagoto So sorry to hear that.

    • @JohannRosario1
      @JohannRosario1 Před 3 lety

      What do you know about PRIONS DISEASE?

    • @marcika
      @marcika Před 3 lety

      liar

    • @AndrewDrewJamison
      @AndrewDrewJamison Před 2 lety +1

      @@marcika Stop acting like nobody gets prion diseases.

    • @nathankeel4308
      @nathankeel4308 Před 2 lety

      @@marcika listen idiot, obviously a lot of people looking into prion and CJD videos are doing so because they're dealing with it in their lives. Obviously, it's only a topic for people who are specifically interested in learning about it, or who are experiencing it in some way. You're a loser.

  • @tinang5999
    @tinang5999 Před 6 lety +20

    I lost my brother last night at 1:00 am after 6 weeks. They called IT CJD.
    Horror. Can't accept it. It hurts. I love him so much

    • @nancymarieg
      @nancymarieg Před 6 lety +4

      sorry for your loss. my friend passed from this today.

    • @_JUAN_-nl9sh
      @_JUAN_-nl9sh Před 5 lety

      I have to admit they're not doing nearly enough to cure this

    • @rochelleb1338
      @rochelleb1338 Před 3 lety +2

      I am so sorry for your loss my sister just got diagnosed with it a month ago and it hurts so bad to see your loved one like that

    • @user-jd1cg9tv5c
      @user-jd1cg9tv5c Před 3 lety

      Здравствуйте, как ваша сестра, расскажите её симптомы.

    • @user-jd1cg9tv5c
      @user-jd1cg9tv5c Před 3 lety

      Hello, I am from Russia, please tell me how old is your sister and how much is she sick?

  • @nancymarieg
    @nancymarieg Před 6 lety +8

    lost a friend today from this.. gone in 2 months... She was 57.

  • @SeecondToNone1
    @SeecondToNone1 Před 3 lety +6

    My mother was just diagnosed with CJD. No history of disease.
    We are in sock, it's devastating.
    Going down rabbit holes lead me here.
    We decided to go biopsy when she passes to find out if it's fCJD or sCJD.

    • @user-jd1cg9tv5c
      @user-jd1cg9tv5c Před 3 lety +1

      Hello, I am from Russia, please tell me how old is your mother and how much is she sick?

    • @SeecondToNone1
      @SeecondToNone1 Před 3 lety +3

      @@user-jd1cg9tv5c she has passed away. She was 62.

    • @da-yp1wu
      @da-yp1wu Před 3 lety

      @@SeecondToNone1
      Sorry for your loss. Do you know by any chance if she had Covid?
      Covid virus has been known to cause prion misfolds which cause neurological issues similar to CJD.

    • @SeecondToNone1
      @SeecondToNone1 Před 3 lety +2

      @@da-yp1wu she did not have covid-19 and was tested at hospital multiple times. Was tested at multiple hospitals as well.
      Please explain to me how this works.
      Are you trying to claim every type of coronavirus or just this one specific stain?
      I cannot see how a simple coronavirus can accelerate the mutation of a protein molecule. But if this is the case please explain how.

    • @marcika
      @marcika Před 3 lety

      @@SeecondToNone1 it’s a bullshit of course.

  • @alexalvarado7325
    @alexalvarado7325 Před 6 lety +6

    I just lost my friend to this disease today at 2:30 I'm devestated!!!!

  • @lizichell2
    @lizichell2 Před 5 lety +3

    A most upsetting sickness

  • @melissawilliams361
    @melissawilliams361 Před 5 měsíci

    I lost my mother to CJD in 2015, she also had REM behavior disorder "RBD". I was diagnosed with RBD in 2010. I started losing my eye site and short term memory. Myclonic movements when sleeping. I had to medically resign as a RN. I had started an all fruit diet 4 months before I went into full blown dementia . It took me 1 1/2 to recover almost all my faculties. It worked !! My biggest issue is having 4 children " 2 out of the 4 had RBD also. I can't find anyone to test my daughter and I via blood test or CSF for the mutation. The CDC called and spoke with my sister and I soon after my mother passed. They asked if we wanted to be tested. We both at the time said no " it's fatal" I didn't want to worry every day , am I starting to go downhill. CDC now says they have b never done that , four ER's pushed me out the door when I was declining. It was terrifying then and still is. I have contacted a lady that works in a lab here in the US. They need me to send my MRI " that showed a positive pulvner sign. They said it was normal. Never sent the results to my sleep doctor , who watched my decline . I feel I am going down again. I am so scared, nobody wants to test me to find out for sure. I need the information , especially for my daughter's sake. My other child that had RBD passed away in 2018. Crossing an interstate on foot at 5am" in the middle of nowhere . If someone reads this " if you can help me please . I'm about to give up . Thank you

  • @wormhole331
    @wormhole331 Před 3 lety +3

    At least she was lucky to have a long full life. A lot of people with this die in their 20's.

    • @kinjalghosh3350
      @kinjalghosh3350 Před 3 lety

      Lot of people? Cr Jacobs is One in a million disease, that too most common in the mid 50s-60s age group.

    • @user-jd1cg9tv5c
      @user-jd1cg9tv5c Před 3 lety +4

      It is common, at 60 years old, but many young people die, even at 25 years old.

    • @somnuswaltz5586
      @somnuswaltz5586 Před 2 lety

      @@user-jd1cg9tv5c Just cuz some CJD victims die in their 20s does not mean MANY young people die of it. It is exceedingly rare for people below their 50-60's and higher to die from CJD.

    • @blemmyaes3734
      @blemmyaes3734 Před 6 měsíci

      @@kinjalghosh3350one in a million is not that uncommon lol

    • @KaoruSan241
      @KaoruSan241 Před měsícem

      @@kinjalghosh3350it’s actually one in 2,000 in the UK. Don’t talk about something you clearly don’t understand. You have no idea the impact this disease had on my country

  • @angelrsalazar92
    @angelrsalazar92 Před 5 lety +7

    How is this spread? Genetic ? Might be a dumb a question... bless everyone that has to go through this

    • @hereisyoursign6750
      @hereisyoursign6750 Před 5 lety +4

      Familial CJD is indeed genetic, with offspring typically having a 50% chance of getting the gene

    • @palmspirit1833
      @palmspirit1833 Před 5 lety +2

      The other kind is through infected beef, blood donation and organ transplants. But there have been effective measures that really reduce the chance of spreading/acquiring CJD in a person’s lifetime.

    • @palmspirit1833
      @palmspirit1833 Před 4 lety

      Good Goy I agree.

    • @user-sx2we1xe5q
      @user-sx2we1xe5q Před 2 lety +1

      Sporadic CJD is the mutation happens spontaneously in people.

    • @reanimationeas342
      @reanimationeas342 Před 2 lety

      There is genetic, sporadic and infectious.
      There is a lot of mystery behind prion disease

  • @sangeeta4645
    @sangeeta4645 Před 6 lety +7

    My mummy is suffering from CJD and she is bed ridden, she is just 55..can anybody help me with any remedy.... I don't want to lose my mom... She is my world....

    • @pilotavery
      @pilotavery Před 5 lety +11

      Unfortunately, it is a disease with no cure. There is likely not going to be a cure for at least a few decades, because we have a lot to learn about understanding proteins in the way that they are folded.
      I'm so sorry to hear about the loss of your mom. You can volunteer for protein folding at home by using any processing power of your laptop that's not being used, it folds simulations of proteins which in turn figures out how they interact. Continue in this is the best way to assist in finding a cure.

    • @ugandanknuckles2813
      @ugandanknuckles2813 Před 5 lety +1

      This was 7 months ago. Goodluck sangi, people with CJD are not expected to live more than a year once infected.

    • @rosemartinez2218
      @rosemartinez2218 Před 5 lety +1

      I just lost my husband to CJD October 31 -2018 it started July only 4 months My husband and father .

    • @vikkishelton9360
      @vikkishelton9360 Před 5 lety +1

      So sorry...

    • @JizzPope
      @JizzPope Před 3 lety

      ​@John Levison why dont you go and scam people who arent desperate you piece of shit vulture

  • @reanimationeas342
    @reanimationeas342 Před 2 lety +2

    Prion disease or as I like to call it- Horrible way to die

  • @marcika
    @marcika Před 3 lety +3

    I had SFI, and then CJD, but I recovered from both. Probably because they were only in my head due to the too much shit (like this video) I watched on youtube...

  • @marcika
    @marcika Před 3 lety +2

    Pause at 0:40. :DDDDDDDDDDDDDDDDDDDDDDDDD That's not a PhD look. :DDDDDDDDDDDDDDDDDDDDDD

  • @marcika
    @marcika Před 3 lety +3

    I dont believe this was CJD. The old witch was able to speak. I WANT TO SEE THE AUTOPSY RESULTS!!!!!!!!!!

    • @AndrewDrewJamison
      @AndrewDrewJamison Před 2 lety

      Stop acting like nobody gets prion diseases.

    • @r.xkiiwa2171
      @r.xkiiwa2171 Před 3 dny

      What in the actual fuck is wrong with you? It's very clearly cjd, some people who are in early stages of the mutation are cognisant enough to talk and speak, it's later that they lose the ability to do so. To call her an "old witch" is so fucking disgusting