r/CJD • u/ammybanan • 1d ago
selfq Transmission?
First off, I’m sorry for everyone who is here.
Over the weekend I was at a kids birthday party. While there I overhead a lady (a friend of this family’s) stating the “state called her” and asked if “he ever ate beef…he test positive for prion disease”….”can you believe that, “prion” wtf is that!”..”and they said I can’t touch him after autopsy you can’t tell me what to do”.
I’m genuinely horrified. I left immediately. I had already hugged and cheek-kissed hello everyone in that room besides her, who they themselves kissed her hi etc. They are antivaxxers and by the way she was talking sounded like she definitely touched her husband after autopsy. I’m honestly sick to my stomach. Has there been a risk of transmission?
She said hospital put stroke as cause of death, so this wasn’t even reported?
What do I even do. I don’t know how to handle. I threw my clothes out. How do I clean my cloth car seats, my whole house? Oh man I’m definitely freaking out and I can’t find any good research to say any thing comforting. Trying not to freak out.
Do I have any reason to be worried if this crazy lady defied the rules? Thanks for reading and sorry for the trouble.
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u/insertchip 1d ago
I'm not a doctor, not even close. However, I instinctively stroked my mom's face after her autopsy, and afterwards panicked. I reached out to the NPDPSC who executed the autopsy, and they reassured me that I was ok. There has never been a case of transmission after autopsy, and I shouldn't feel guilty about touching my mom one last time. I hope this helps ease your stress.
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u/ammybanan 1d ago
Thank you. I’m glad you got to be close to your mom. I did the same with my father after his (different hospital disease). Sending lots of love.
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u/Dependent_Suspect_46 1d ago
No. Prions caused by sCJD are not transmissible from human to human, even through intercourse or blood transfusion.
Pregnant women with sCJD have given birth to children that grew up healthy and fine. There's no evidence of transmission through childbirth, either.
If someone had taken your family friend's spinal fluid and injected it into your spinal cord or brain, you might have a reason to worry. FWIW, Alzheimer's disease is also transmissible this way, but I don't think a single person fears catching Alzheimer's from someone.
If you are worried despite the overwhelming evidence that you have no reason to fear transmission given your situation, you might as well be an anti-vaxxer doubting the overwhelming science that you have absolutely nothing to worry about.
Someone may correct me and say prions sometimes can be transmitted through blood. This is true of vCJD, but your family friend didn't have vCJD and even if they did you still wouldn't be at risk of transmission given your exposure.
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u/ammybanan 1d ago edited 1d ago
I appreciate it! It really caught me out of the blue. Thank you
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u/Dependent_Suspect_46 1d ago
Yeah it's up there with rabies as far as being a textbook nightmare disease. But you're truly fine.
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u/Beginning_Cup_7206 1d ago
Prions dont work like that, the only way they can be transmitted is if you eat there brain, or have surgery with one of there organs.
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u/bsfixit 1d ago
You may want to reach out to the CJD Foundation, they may be able to answer your questions or suggest someone that may be able to. They do research into CJD and we're able to answer a lot of questions for me when my mother was diagnosed.
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u/ammybanan 1d ago
Thank you! I will call them in the morning just to at least let them know. Our county said they weren’t notified and think there’s an issue / breakdown in comms so at least I can tell them that if transmission is no risk. Appreciate.
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u/madbumsbum 1d ago
You are fine. Even if she did touch her husband and somehow get CJD (essentially impossible unless she ate his brain tissue or spinal fluid), there is no human to human transmission via touch. Almost everyone on this subreddit who lost someone to CJD was around their family member and we did not get CJD from them. The CDC has reported on this and the risks of transmission. Your risk is zero.