My husband had this disease he started in March 2020 first he was falling over for no reason I tried to see a doctor but it was lockdown so only online messages. After 2 weeks things were the same only no he was unable to remember simple things still falling over. In April I took him to the hospital they kept him in for tests this went on for 4 weeks in all this time we couldnt see him. He was transferred to a neuological hospital by this time he was into the 5th week and they told us is was CJD and he only had a few days left. We were devistated he was barely concious so we couldnt talk to him, he passed away few hours later May 2020 no time for goodbye. This is a horrible disease for anyone to go through.
God bless her. , this disease is almost impossible to tackle, but she's really thinking in some ways outside the box. Advanced Combination therapies may well be the future in modulating and treating or maybe even stopping such a horrible bunch of diseases
We need to modulate the FDA, otherwise it's gonna be Spinraza all over again. (Existing life saving cures senselessly banned from terminal patients long enough to doom another generation to being crippled). Just imagine the number of lives that will have been needlessly lost if cancer cures are delayed by 20 or 30 years....and from what I've learned about how the FDA operates, combined with the massively increased R&D costs inside of the heavily restricted legal framework plus rigid and tactless approval process which gives zero consideration to the wishes of the community in need of the drug, and I could honestly see us being up to 40 years behind since the 1960's compared to where we should be since then. (It's entirely possible that progress, globally in drug development has been slowed 75% or more since the increased restrictions after the thalidomide disaster.... Now thalidomide was bad, but what would 40 years worth of cancer deaths amount to? Heck even just five years??)
I do believe my mother has this. She was turned down for Medicaid and is now waiting for her birthday Jan 21st. She is rapidly getting worse, I'm at a loss. She has every single symptom and there is nothing we can do as far as testing until she has a way to pay for it.
@@sagestrings869 wouldn’t that pass on her maybe misfolded proteins to other patients like how people pass CJD or Mad cow cow disease with blood transfusions? Why are you suggesting she spread her disease to keep herself alive longer? That’s maybe the most unethical thing I have ever read.
It’s interesting that it says if given in the later stages, the progression isn’t effected. I believe it is similar in other neurodegenerative conditions such as SSPE and ALS.
Im so sad that i only discovered this vídeo now, because my dad was diagnosed with cjd early (eh only had few symptons at the time of diagnosis) but unfortunatelly we had no option of treatment and now he is on a bed. Maybe we could have tried something in experimental
My husband had this disease he started in March 2020 first he was falling over for no reason I tried to see a doctor but it was lockdown so only online messages.
After 2 weeks things were the same only no he was unable to remember simple things still falling over. In April I took him to the hospital they kept him in for tests this went on for 4 weeks in all this time we couldnt see him.
He was transferred to a neuological hospital by this time he was into the 5th week and they told us is was CJD and he only had a few days left.
We were devistated he was barely concious so we couldnt talk to him, he passed away few hours later May 2020 no time for goodbye.
This is a horrible disease for anyone to go through.
God bless her. , this disease is almost impossible to tackle, but she's really thinking in some ways outside the box. Advanced Combination therapies may well be the future in modulating and treating or maybe even stopping such a horrible bunch of diseases
We need to modulate the FDA, otherwise it's gonna be Spinraza all over again. (Existing life saving cures senselessly banned from terminal patients long enough to doom another generation to being crippled).
Just imagine the number of lives that will have been needlessly lost if cancer cures are delayed by 20 or 30 years....and from what I've learned about how the FDA operates, combined with the massively increased R&D costs inside of the heavily restricted legal framework plus rigid and tactless approval process which gives zero consideration to the wishes of the community in need of the drug, and I could honestly see us being up to 40 years behind since the 1960's compared to where we should be since then.
(It's entirely possible that progress, globally in drug development has been slowed 75% or more since the increased restrictions after the thalidomide disaster.... Now thalidomide was bad, but what would 40 years worth of cancer deaths amount to? Heck even just five years??)
Nice video. The active researchers in this field are going to win... the nobel prize for medicine/physiology
amazing explanation. thank you so much
I do believe my mother has this. She was turned down for Medicaid and is now waiting for her birthday Jan 21st. She is rapidly getting worse, I'm at a loss. She has every single symptom and there is nothing we can do as far as testing until she has a way to pay for it.
Donate Blood plasma. it may slow down disease progression
How old is your Mother? Are you sure she isn’t just experiencing dementia symptoms? They seem to be almost exactly the same?
@@sagestrings869 wouldn’t that pass on her maybe misfolded proteins to other patients like how people pass CJD or Mad cow cow disease with blood transfusions? Why are you suggesting she spread her disease to keep herself alive longer? That’s maybe the most unethical thing I have ever read.
@@samsalamander8147 U IDIOT obviously i meant she was receiving the plasma
@sam salamander
That person meant donate to her, not take donations from her.
It’s interesting that it says if given in the later stages, the progression isn’t effected.
I believe it is similar in other neurodegenerative conditions such as SSPE and ALS.
Hope more research is done for prion disease so can we have effective treatment against them.
Im so sad that i only discovered this vídeo now, because my dad was diagnosed with cjd early (eh only had few symptons at the time of diagnosis) but unfortunatelly we had no option of treatment and now he is on a bed. Maybe we could have tried something in experimental
oh. my condolences dear
F bro
How's your dad now?
Hope youre doing fine now
I'm so sorry Lizzie.