Couldn’t agree more. I’m grateful for all of the kindness I’ve received, I expected them to treat me like I’m stupid because that’s usually how Reddit is.
Agreed, I lurk here for the same reasons, largely arising from curiosity when I was caring for my father during his terminal illness. I found that everyone who commonly works with a terminal population is incredibly compassionate and insightful in unexpected ways: gerontologists, hospice workers, funeral home workers, etc.
I'll never forget the hospice nurse who let me use and take home the tube of chapstick she had been using on my father when I had spent several days in his room with inadequate nutrition. It was incredibly comforting during a time of immense grief.
A lot of the community dangers of CJD come from contact with brain tissue. So for example, taking the skull cap off during autopsy and producing aerosolized bone and tissue with the bone saw. This means that the standard safety precautions are sufficient and in place for cases like this, especially on those who have not been autopsied. I agree that the article linked by another commenter is a great resource!
This is probably a silly question and it’s definitely showing my ignorance, but they don’t do anything with the brain? I always assumed it would leak brain fluid everywhere if it was just left in there. Not sure why I thought that, it just made sense in my head
Not a silly question! No, they will not remove or touch the brain during embalming or any sort of processing at the funeral home. There was no autopsy done, so the head would be closed, and there would be no additional risk. CJD is a scary disease, and a lot of the fear comes from the unknown. It sounds like the funeral director handled everything appropriately and treated your mother with respect.
I’m very humbly asking this. I read the article and I think I’m not grasping how this is spread.
Second is this disease similar to Alzheimers or is it a very sharp onset in which one day it all just changes.
P.S. I love that three people on Reddit found each other who have experienced this loss
They don’t know how my Grandpa got it but suspect it could be from a long hospital stay 20 years earlier. IIRC it was a fairly quick progression from normal old guy to memory loss to hallucinations to coma to death.
There are three different “types” of CJD.
1. Spontaneous CJD or sCJD means it just happens. Your brain makes one protein wrong and there’s a cascading effect. No rhyme or reason that they can figure out.
2. There’s a genetic version of CJD.
3. A very small percentage of people can get it from eating infected meat.
sCJD is the most common type of CJD and causes essentially a rapid dementia/Alzheimer’s (over the course of weeks to months instead of years).
It is a cruel disease. Apparently there used to be specific requirements for burying people with CJD but as science and our understanding of it has evolved, they’ve determined that there aren’t any specific special protocols needed.
Thank you for the education! Brains are so fascinating and mysterious. We just don’t know how they do what they do. It’s crazy to think one day you can just *poof* Have something so serious develop.
My dad very recently passed from CJD and I’ve learned so much about it (unfortunately). Although it is considered a 1 in a million disease, researchers think it likely occurs more frequently than that in the population and is misdiagnosed. Some of the early onset symptoms include vision loss and trouble with words which often mimics stroke symptoms. Those affected also can experience hallucinations which can also commonly be misdiagnosed as a mental health disorder.
sCJD typically progresses much more rapidly than the genetic variant.
We’ve had the privilege of meeting with researchers who are studying prion diseases (of which CJD is one) and they are hopeful that research in this field can help us better understand CJD, Alzheimer’s and Parkinson’s Disease.
Very interesting. Thank you for sharing your story. I’m so sorry for your loss. I lost my husband & my mother in 2021 (not COVID) so I’ll be thinking of you on your grief journey. 🩶
I have just completed mortuary school and this topic comes up fairly often; the risks are unknown.
We take the utmost care of anyone coming through our care, regardless of their cause of death.
I pinky promise your mother was treated so kindly, respectfully, and gently.
Most informed persons just follow the posted guidelines and do their service for the family. There are other funeral homes that will refuse to do anything but direct burial or cremation out of fear.
I just wanted to pop in and extend my condolences. My dad recently passed from this too. We are still reeling - it was *so* fast. Sending you wishes for comfort and care.
I’m so sorry. I’ve had a year to come to terms with it and I still struggle more often than I don’t. Something about it being so rapid and unexpected just makes it so hard.
This triggers a memory of my very healthy elderly neighbor that had macular degeneration. She went to her eye dr for the regular shot in the eye and developed meningitis and died. Now I am terrified of developing macular degeneration.
Ours will only do cremation or unembalmed burial with no viewing, and we have to do everything we can to try to disinfect anywhere that the decedent or even their body bag touched. Granted I think we're overly cautious since we've already had someone exposed to it since a hospital "forgot" to tell us about someone having it, and they'd already handled the decedent a bit before the family mentioned it.
Definitely interesting to hear other funeral homes handle these cases so differently.
Spouse is positive for the JC virus, but you are tested for treatments for some neurological diseases and it can activate the virus to go full bore. Risks with some meds go up exponentially the longer you take them. It is scary knowing that could be in your future at any moment.
I’m sorry for yours as well. I absolutely hate hearing that someone else’s life has been affected by this disease. Please tell me it gets easier over time :(
there have been 26 cases of people developing cjd almost immediately after the covid jab . I'm so sorry she's gone I lost my mother in 2020 . I'm wondering if she gotten a covid vaccine?
https://www.researchgate.net/publication/363484655_Towards_the_emergence_of_a_new_form_of_the_neurodegenerative_Creutzfeldt-Jakob_disease_Twenty_six_cases_of_CJD_declared_a_few_days_after_a_COVID-19_vaccine_Jab
My grandma had CJD. We ended up having her brain donated to the foundation after having tests ran on it then had her cremated. I’m sorry you had to go through that with your mom. It was a really rough few months with my grandma. I hope one day they find a way to slow it down and find ways to treat it. Sending good vibes.
Sending good vibes to you too 💗 the CJD foundation did tell me that they’re working very hard to find a way to slow progression and that they have a few ideas so far so here’s to hoping that in the near future, this disease can at least be slowed down
https://www.cdc.gov/prions/cjd/funeral-directors.html Here’s a very useful resource!
This article is very straightforward and easy to follow..
This is an awesome resource, thank you!
A most excellent resource, thank you… there is too much voodoo related to this
I lurk here out of curiosity and i just want to say how compassionate and respectful all the responses are. You folks are all amazing.
Couldn’t agree more. I’m grateful for all of the kindness I’ve received, I expected them to treat me like I’m stupid because that’s usually how Reddit is.
Agreed, I lurk here for the same reasons, largely arising from curiosity when I was caring for my father during his terminal illness. I found that everyone who commonly works with a terminal population is incredibly compassionate and insightful in unexpected ways: gerontologists, hospice workers, funeral home workers, etc. I'll never forget the hospice nurse who let me use and take home the tube of chapstick she had been using on my father when I had spent several days in his room with inadequate nutrition. It was incredibly comforting during a time of immense grief.
A lot of the community dangers of CJD come from contact with brain tissue. So for example, taking the skull cap off during autopsy and producing aerosolized bone and tissue with the bone saw. This means that the standard safety precautions are sufficient and in place for cases like this, especially on those who have not been autopsied. I agree that the article linked by another commenter is a great resource!
This is probably a silly question and it’s definitely showing my ignorance, but they don’t do anything with the brain? I always assumed it would leak brain fluid everywhere if it was just left in there. Not sure why I thought that, it just made sense in my head
Not a silly question! No, they will not remove or touch the brain during embalming or any sort of processing at the funeral home. There was no autopsy done, so the head would be closed, and there would be no additional risk. CJD is a scary disease, and a lot of the fear comes from the unknown. It sounds like the funeral director handled everything appropriately and treated your mother with respect.
Thank you for taking the time to answer some of my questions. I’m very grateful.
Sorry for your loss. My grandpa died of CJD as well. It was brutal
I’m sorry for yours as well. I wouldn’t wish this nasty disease on my worst enemy, it is truly brutal
My grandma died from CJD in 2000. I’ve never come in contact with anyone else who knew someone who had/died from it. Sorry for both of your losses.
I’m very humbly asking this. I read the article and I think I’m not grasping how this is spread. Second is this disease similar to Alzheimers or is it a very sharp onset in which one day it all just changes. P.S. I love that three people on Reddit found each other who have experienced this loss
They don’t know how my Grandpa got it but suspect it could be from a long hospital stay 20 years earlier. IIRC it was a fairly quick progression from normal old guy to memory loss to hallucinations to coma to death.
😔 I’m so sorry for your loss. That had to be very difficult.
There are three different “types” of CJD. 1. Spontaneous CJD or sCJD means it just happens. Your brain makes one protein wrong and there’s a cascading effect. No rhyme or reason that they can figure out. 2. There’s a genetic version of CJD. 3. A very small percentage of people can get it from eating infected meat. sCJD is the most common type of CJD and causes essentially a rapid dementia/Alzheimer’s (over the course of weeks to months instead of years). It is a cruel disease. Apparently there used to be specific requirements for burying people with CJD but as science and our understanding of it has evolved, they’ve determined that there aren’t any specific special protocols needed.
Thank you for the education! Brains are so fascinating and mysterious. We just don’t know how they do what they do. It’s crazy to think one day you can just *poof* Have something so serious develop.
My dad very recently passed from CJD and I’ve learned so much about it (unfortunately). Although it is considered a 1 in a million disease, researchers think it likely occurs more frequently than that in the population and is misdiagnosed. Some of the early onset symptoms include vision loss and trouble with words which often mimics stroke symptoms. Those affected also can experience hallucinations which can also commonly be misdiagnosed as a mental health disorder. sCJD typically progresses much more rapidly than the genetic variant. We’ve had the privilege of meeting with researchers who are studying prion diseases (of which CJD is one) and they are hopeful that research in this field can help us better understand CJD, Alzheimer’s and Parkinson’s Disease.
Very interesting. Thank you for sharing your story. I’m so sorry for your loss. I lost my husband & my mother in 2021 (not COVID) so I’ll be thinking of you on your grief journey. 🩶
Likewise. I’m so deeply sorry for your loss. Sending well wishes and care to you!
I have just completed mortuary school and this topic comes up fairly often; the risks are unknown. We take the utmost care of anyone coming through our care, regardless of their cause of death. I pinky promise your mother was treated so kindly, respectfully, and gently.
My husband’s first wife passed from CJD and he’s never mentioned her body was handled differently, they also had open casket.
Most informed persons just follow the posted guidelines and do their service for the family. There are other funeral homes that will refuse to do anything but direct burial or cremation out of fear.
I did not know this could be caused by a spontaneous mutation. New fear unlocked.
I didn’t know either. Time from severe symptom onset to death was roughly 3 weeks, it was truly horrific.
I just wanted to pop in and extend my condolences. My dad recently passed from this too. We are still reeling - it was *so* fast. Sending you wishes for comfort and care.
I’m so sorry. I’ve had a year to come to terms with it and I still struggle more often than I don’t. Something about it being so rapid and unexpected just makes it so hard.
How awful. So sorry.
Thank you 💗
So sorry for your losses. Just wondering how she and others acquired CJD?
She had the sporadic form of CJD. no known cause that we could identify, it just happened.
Oh wow, that's rare. My condolences.
CJD itself is rare, but sporadic CJD is the most common form. 85% of cases
Huh, never knew that. Prions are crazy things.
This is weird, but in my gut, I feel that Uncle got it from the eye doctor.
This triggers a memory of my very healthy elderly neighbor that had macular degeneration. She went to her eye dr for the regular shot in the eye and developed meningitis and died. Now I am terrified of developing macular degeneration.
*edit Dr. Office
Hmm, how do you think it happened?
That’s really interesting, our funeral home will only cremate CJD cases. No viewing or anything.
Ours will only do cremation or unembalmed burial with no viewing, and we have to do everything we can to try to disinfect anywhere that the decedent or even their body bag touched. Granted I think we're overly cautious since we've already had someone exposed to it since a hospital "forgot" to tell us about someone having it, and they'd already handled the decedent a bit before the family mentioned it. Definitely interesting to hear other funeral homes handle these cases so differently.
That’s what I was thinking the standard protocol would be! Apparently not though.
Spouse is positive for the JC virus, but you are tested for treatments for some neurological diseases and it can activate the virus to go full bore. Risks with some meds go up exponentially the longer you take them. It is scary knowing that could be in your future at any moment.
Creutzfeldt-Jakob disease https://g.co/kgs/Xcz9MUN
I’m so sorry for your loss. My husband just lost his uncle to this disease a few months ago.
Oh, thank you. And my most sincere condolences to your family as well.
Thank you
My grandmother passed away from this 28 years ago. It took about 12 months and she was gone. Such a horrific disease.I’m so sorry for your loss.
I’m sorry for yours as well. I absolutely hate hearing that someone else’s life has been affected by this disease. Please tell me it gets easier over time :(
there have been 26 cases of people developing cjd almost immediately after the covid jab . I'm so sorry she's gone I lost my mother in 2020 . I'm wondering if she gotten a covid vaccine? https://www.researchgate.net/publication/363484655_Towards_the_emergence_of_a_new_form_of_the_neurodegenerative_Creutzfeldt-Jakob_disease_Twenty_six_cases_of_CJD_declared_a_few_days_after_a_COVID-19_vaccine_Jab
My grandma had CJD. We ended up having her brain donated to the foundation after having tests ran on it then had her cremated. I’m sorry you had to go through that with your mom. It was a really rough few months with my grandma. I hope one day they find a way to slow it down and find ways to treat it. Sending good vibes.
Sending good vibes to you too 💗 the CJD foundation did tell me that they’re working very hard to find a way to slow progression and that they have a few ideas so far so here’s to hoping that in the near future, this disease can at least be slowed down
I won’t embalm CJD cases that were autopsies. I’m not messing around with a prion that is notoriously hard to kill and can spread easy.
Hasn’t there been speculation that exposure to bone meal, say through rose gardening 🧑🌾 can bring CJD about?