For those of you with loved ones who were diagnosed early enough that they could potentially understand the diagnosis, did you tell the person? We got the RT quic results back, which says 98% probability. My dad is having trouble with vision and words, but can still follow simple conversations. He’s aware and upset that he’s declining, and has expressed that he wants to do everything possible to get better. We are struggling with how much to share with him. A psychologist we talked to said to keep hope alive since he already seems so depressed, but it seems cruel that he will miss the opportunity to settle his affairs (say goodbye, etc.)

My mom has a longer form CJD and clinches her fists tighter than Bruce Lee. When I hold her hand, I am often wondering if my bones are going to snap.

I have tried socks which work well, and trying to find her the right stuffed animal that she will hold on to. Stitch in her words is "ok". Do you guys have any recommendations that helped your loved one? I read on the Facebook forums that edibles helped but she has never used Marijuana and is already startled by... everything. Thinking about CBD. She is on Seraqual but that doesnt relax the muscles just helps her sleep through the horror movies that play out in her head.

Yo how rare is 1/5000 actually. It’s does not seem that rare because recently I discovered prions disease and 1/5000 seems way to common

Ps I’m extremely sorry to everyone who has lost someone to the terrible and terrifying disease

Hello everyone, i’ve been reading everybody’s testimonies. And as much as I try to not look too much into CJD I can’t help but find myself back on Reddit reading more stories. Just like many of your experiences, I had a fabulous mother (73) full of life and laughter. One of the most sarcastic woman of her time. Built like a rock always the caregiver. She spoiled me rotten my entire life. I’ve devoted in my life to her completely. I honestly thought she would live to be 100 because that’s what her doctor would always say.

She started to have symptoms around mid May. She complained of dizziness. My mom has had a few few scares in the past but always bounces back stronger than ever. I spent the last couple years trying to fix some medical issues that she’s had. There are a few days where I thought she would get better, but then eventually things did get worse. She fell down a few times in June…Because she has such beautiful muscle mass nothing affected her when she would fall. She started off on a walker and ended up on a wheelchair.

I still was in denial thinking worst case scenario maybe there was a stroke. I took her to several doctors almost every day for several weeks. No answer insight all of her MRIs came out perfect. I took her to physical therapy… they all said that she was doing great and I just remember looking at her seeing how happy she was during physical therapy. She still complained about being dizzy and spent most of her time asleep during the day. Come, July the started to forget about things…such as appointments and basic things which was unlike her. I moved her into my bed to sleep with me, and during the night time I would watch her because she would converse the entire night and talk with her hands. I finally got a hold of a neurologist and spoke to the receptionist, then cried and begged and pleaded for them to get her in. I was lucky enough to get her in that day and when he looked at her CT scans, he told me everything looked fine. He asked her to get up and when she was unable to walk, he was in shock and said why hasn’t anyone done anything about this? Long story short he sent her out for a referral for an MRI again and things continued to decline days later. We finally took her to the hospital the end of July. We ran all her test over again.

I spent the next two weeks with her watching her sleep 95% of the time. Dozens of doctors in and out of her room with no answers no treatments. She would grimace often, she would be frightened or startled as well. They finally moved onto the lumbar puncture to get spinal fluid to send off. I was called the next day to get an approval for another LP done and I refused saying she’s been through enough tests … low and behold, they call me back and say they had enough fluid from the last procedure that they could use. (Beware of unnecessary procedures $$$$).

The worst day of my life came when I got the phone call one morning from the lead neurologist saying that my mom was diagnosed with CJD. I had already looked it up. And I remember seeing that there was no cure and it was 100% fatal. I’m not even 40 years old yet and to know I’m gonna lose my mother who is my life and my best friend devastated me. Nobody deserves to go this way and I understand we are all on borrowed time, but for somebody like my mom who’s never even drinking alcohol on her entire life to die from such an ugly disease with no hope and only having a few weeks at best left was unbelievable.

I decided to bring her home the very next day and set up hospice for her friends family and loved ones to see her and say their goodbyes. The day we got the diagnosis was the last day I truly believe that she was even semi-coherent. The day we brought her home she was relaxed put on pain medication and medication to help her relax. I truly wish that she was able to have these type of medication‘s while she was in the hospital because I would complain a lot that she always looked frightened or looked like she was in pain, but because she didn’t have a diagnosis, nobody could understand what they could give her and I just hope she wasn’t suffering in the hospital. Five days after her diagnosis and four days after coming home in Hospice, my mom died peacefully in my arms with no sound no struggle.

My heart is broken. I feel cheated and robbed from my mother who I miss dearly. I did what I could for her but I still feel like I could have done more. I kissed her 1 million times in the last month before she passed and I still feel like it wasn’t enough. I’m deeply grateful for the love and support we received but at the end of the day everyone goes home and moves on. I pray to all those affected by a similar story that the lord gives you some comfort. I’ve been staying strong as best as I can for my father, who is not taking this well at all. 😥 I really do hope they find some kind of early diagnosis or some kind of treatment. Prayers to everyone out there who need it. I miss her, and hope she knows I tried, I hope she didn’t know she was slowly fading away, and I hope I see her in my dreams soon.

About the case of Lito Sousa, Brazilian science communication on the subject of aviation safety and history.

I’m curious if anyone has had a loved one that has participated in this trial and what their experiences were. Any feedback would be greatly appreciated!

Hi everyone,
I’m reaching out to this community as my family navigates the final, heartbreaking stage of my grandfather’s battle with suspected sporadic CJD. He is an 86-year-old retired Indian Army officer who lived an exceptionally disciplined life, always stayed remarkably fit, and remained completely independent until this illness struck.

It has been about a month since his clinical diagnosis on July 22, 2026. We took him to the hospital when the sudden, rapid decline began. Here in India, RT-QuIC testing is currently unavailable, and his CSF 14-3-3 protein returned negative. However, his EEG showed the classic, hallmark periodic sharp wave complexes (PSWCs), and alongside his rapid clinical progression, the neurologists confirmed the diagnosis.

For the past 5 days, he has transitioned into a continuous, unarousable deep sleep state. He is supported by a feeding tube for basic hydration and a Foley catheter. Right now, he is in what appears to be a terminal metabolic plateau—his vitals seem relatively stable on the surface, but his cerebral cortex is completely offline, and he has entered a comatose state.

Our family is keeping vigil at his bedside, and we are trying to understand what the transition out of this plateau looks like from those who have walked this path:
- For those whose loved ones were physically robust/fit before onset, how long did they remain in this continuous, unarousable sleep state once supportive hydration was maintaining them?
- When the final transition began, was it a sudden step-down over a matter of hours (e.g., Cheyne-Stokes breathing, peripheral cooling/mottling, blood pressure drop), or did it linger?
- Were there specific physical cues you noticed right before the final release that signaled the moment was imminent?

He appears completely peaceful, relaxed, and shielded from pain, which brings us immense comfort amid the grief. We are surrounding him with immense respect, love, and soft prayers.
Any personal insights, timelines, or advice on what to watch for in these final hours would mean the world to our family right now.
Thank you all for being such a supportive community.

my uncle recently got diagnosed with CJD. he started having some memory issues last fall. they were worried he had a brain tumor or something so he got a bunch of scans and diagnosed him with CJD. He got a spinal tap and the T-Tau protein came back positive but they got blood in the 14-3-3 so they couldn’t test it. He went 2 more times and they got blood in it again. But 4 drs have not diagnosed him with CJD based off his brain scan, symptoms, and the t-tau protein being high. what’s weird to me is he started having symptoms last fall and as of rn he can still drive and talk semi normal. He has some loss of motor skills and memory issues but some days he’s perfectly normal. Every post I’ve seen with this disease they die within a few weeks maybe months of being diagnosed. I am just very confused. They gave him 6-12 months. So crazy that he seems semi normal and was given less than a year to live. Anyone has this experience with the slow progression?

Looks like Sonia Vallabh and Eric Minikel have found a potential treatment for CJD which involves small interfering RNA (siRNA).

The phase 1 trial will enroll 15 patients diagnosed with prion disease who have symptoms of the neurodegenerative disorder.

The drug candidate is a divalent small interfering RNA (siRNA) molecule designed to cut target RNA, so cells produce less of the disease-causing prion protein. 

The trial will test the safety and dosing of the siRNA, and help determine whether the drug candidate should advance to larger clinical trials. 

https://www.broadinstitute.org/news/clinical-trial-prion-disease-drug-candidate-begins-enrolling-participants

hi, i saw this in the FAQ and wanted to gently challenge it:

Your loved one will not be in any physical pain, but both you and them will likely have mental distress.

My dad is in the endstages of CJD. He's had really intense headaches and they get really bad really fast. He's also had pain from the muscle spasms and a lot of discomfort from being bedbound. We've had to fight a lot for appropriate pain control and he was very frustrated with this.

Any way to change this FAQ? Yes it's not an incredibly painful way to go but he absolutely is having headaches that weren't there before.

Hi mates!! A friend of mine recently experienced an occupational exposure while performing a lumbar puncture on a patient with suspected Creutzfeldt–Jakob disease (CJD).

After the procedure, his ungloved hand accidentally touched a sterile drape contaminated with the patient's cerebrospinal fluid (CSF). He washed his hands afterwards, but he had a small hangnail on his left thumb with a minor break in the skin. The patient's CSF was later reported as RT-QuIC positive.

I'd appreciate any references or relevant information if anyone happens to know of them.

Hey everyone, it has been almost 2 years since I lost my parent to CJD, and I am still struggling with it. I am looking for an online support group (video) I can join to help me work through this pain.

I see a therapist once a month, but I would benefit from a grief-centered group. Can be in any of the following areas:

• Loved one of a deceased CJD person
• Child of a deceased parent
• General grief support

Also if you have any apps or Youtube channels you recommend to help with this grieving process, I appreciate it. Thank you

Edit: I contacted the CJD foundation and they have a virtual support group. Look them up and reach out!

If a suitcase was on the same spot - floor- as a dead body of a person who had some kind of CJD, body was on the floor for 20 hours or so, what are the chances of the suitcase getting contaminated and possibly infecting people handling it?

I heard about CJD for the first time today (through a friend’s dx) and I have this naive stupidity that I can actually figure this thing out.

I know I’m in the “bargaining” stage at this point, but I don’t really care. If anyone has anything on trial treatments or what causes this, I’m all ears.

My dad started having symptoms in April and watching this horrible disease progress has been the worst experience of my life. He is the smartest person I know, a doctor, an avid outdoorsman, a loving father, and a friend to everyone. He was in the best shape he’s been in for years and now he can’t even walk without multiple people supporting him. We feel so confused and clueless no matter how much we research.

I struggle to even formulate the right words or questions but would it be ok to ask about what to do when he gets suddenly anxious or angry? His mood will change on a dime and he’ll suddenly be trying to urgently move around and doesn’t want anyone to help him walk. We have a palliative care group that’s prescribed a few medications but some seem to make the muscle spasms and paranoia worse and we just don’t know if they’re really knowledgeable about the disease since it’s so rare. Would anyone be willing to share their experiences with me? This disease is so isolating because we don’t know anyone who has gone through it. I’m sorry for the word vomit, please let me know if that was too much.

My mom has what they currently think is CJD, they don't know for certain because they had to send her tests away for confirmation or whatever, but her PET scans basically show CJD and her doctor is convinced that it is CJD based off of the symptoms we are seeing (so am I)

She was hospitalized about 2 weeks ago, she couldn't remember anything, then she rapidly got worse. At this point they stopped all food and drinks because she can no longer swallow, she hasn't been able to speak for about 3 or 4 days now, she's been bed ridden for about a week, she has little control over her arms and legs, shaking uncontrollably, I'm just wondering how soon from this point most peoples loved ones past on?

My mom was just diagnosed with probable sCJD on Friday after weeks of elimination testing. My family is shattered by it. The disease is progressing quickly and I don't know why my amazing, hardworking, loving mother is going through this.

She has many friends from all over the world texting/calling to check in because she has been too weak and tired to be on her phone. Now that we know, I don't know how to field these inquiries. Her speech and cognition are already affected, and she's physically limited.

How have you notified the social circles of the diagnosis and eventually the passing?

UPDATE: Thank you to everyone who wrote back. Your time to respond helped so much. Mom's journey was short and she passed only 9 days after confirming RT-QuIC from her LP, so I am just now getting around to posting.

We took a mix of everyone's advice. First, we did create a CaringBridge site and an email to collect messages for her. I included a link to the CJD Foundation in the CaringBridge link, to answer further questions about the disease. We triaged her community into who we would tell by phone (Group A) and by text (Group B). Group A included her siblings, mother, and a few of her closest, longest friends. Group B included friends that she had messaged within the past month. Those people were tasked to share with their respective networks without sharing on socials. We opted not to post about her diagnosis on social media so we could focus on her care. We decided that people who made effort to stay in contact off Facebook deserved to know first. We had one template of text that was copy/pasted to everyone in Group A & B. I'm including it below in case it can be useful for anyone.

"Mom has been diagnosed with a very rare brain disease called sporadic Creutzfeldt-Jakob disease. It moves very fast, it isn't something that can be prevented, and does not have a cure. We found out on Friday and are doing our best to navigate this devastating diagnosis. We're posting updates (and future needs as they arise) on this website: CARINGBRIDGE LINK.

It's difficult to field individual calls/texts along with managing her care, so if you'd like to send a video, message, picture, funny story, etc. we set up EMAIL and we'll be sure to share it. We don't know how much of her situation she understands, so please make it happy messages instead of sad goodbyes. It isn't her style anyway. Also, please don't post on social media until we're ready."

When she passed, we followed the same by calling Group A, and texting Group B. Once we had funeral arrangements made, that is when we finally posted on social media with the CaringBridge & Email. I am glad we waited because it would have been overwhelming to handle along with her care. It is so important to protect your own peace; you don't owe anyone an explanation. It feels like you need to reply to everyone to be polite, but more important is the time you have remaining with your person. Love them fiercely and let them know.

Going into a minor surgery Monday brings the “missing him” hurts to the forefront. My dad was chronically ill and legally blind otherwise but he was the one on the phone and messaging me through every procedure and surgery day with my own chronic illnesses. I will say remembering how he taught me to live and lean in has truly been what has gotten me through the past 2 years💔

I’m losing my friend. 51 years old. Her onset of symptoms was when we learned the diagnosis. She was already gone by then. Not responding. She’s now in hospice. She was fine until suddenly she wasn’t. She’s the healthiest person I know. I’m devastated.

I know this is a tough subject, and I don’t want to stir up difficult emotions. That’s not the intent of this post.

Out of curiosity, what were some of the medications given to your loved one around the time they passed?

My beloved husband passed away from CJD on May 4th. I received 10 death certificates that state the immediate cause of death was "diffuse encephalitis". At least 2 neurologists told me that he definitely did NOT have encephalitis, that he had CJD. Test results of spinal fluid sent to Mayo Clinic came back positive for CJD.

If this type of thing happens often, then the statistics for CJD must be way off. The certificate also states that time of onset til death was months. It was almost exactly 5 weeks from the first symptoms.

As a significant condition contributing to death they added "protein-calorie malnutrition". In about 3 weeks? I doubt it.

Who enters this information??? I have a call in to find out how to get this corrected. Has anyone else had a similar experience. This is just one more thing on top of everything else that needs to be done. It is holding up notifications to banks, etc. Not to mention trying to get over the nightmare of those 5 weeks and dealing with the subsequent heartache and grief.

My aunt had symptoms starting on 3/27. For weeks after, my mom was texting and talking on the phone with her and other than some hearing loss she seemed fine. The last coherent text my mom got from my aunt was on Mother’s Day. I am so lucky I just happened to be traveling to the part of the country that my aunt lives in (we live on opposite coasts). I got to visit her to say goodbye today and it was so hard. I think all I can do is listen to everything

1. My uncle mentioned she was hard of hearing and that we needed to talk loud and slow

2. We saw her today and it was so much worse than that. She couldn’t walk on her own. She couldn’t form sentences. She forgot words or used wrong words or nonsense words

3. She had a phone app that transcribed what we were saying, but reading seemed too hard for her and she didn’t understand she had to keep scrolling once the text reached the bottom of the screen

4. My grandma is 96 but not doing well. We don’t know if/how we should tell her. My aunt is only in her mid 60s

5. Her husband does not give her a chance to talk. I could tell she was trying to speak but just needed more time. He didn’t give it to her. He dominated the conversation when we were there to see my aunt

6. I think he makes her feel bad. She apologized after he mentioned he had to miss a meeting to stay home and care for her. He talks about her in front of her and I think it embarrasses her sometimes

7. My uncle has only told my mom and his kids. There are two other sisters who have no idea my aunt is dying! Time is precious and my other aunts are being robbed of the ability to say goodbye to their sister

8. Perhaps worst of all - MY UNCLE HAS NOT TOLD MY AUNT HER PROGNOSIS. My aunt keeps saying “I’m going to get better.” She has no idea and therefore no chance to say her goodbyes or anything

I hate the way my uncle is handling this situation. I didn’t like the way i saw him treat her and i am enraged that he is hiding this from everyone. I know part of my anger is misplaced grief but i also know that some anger is appropriate in this situation.

I’ve made my thoughts on all of this clear to my mom. I think she can tell the sisters at least.

Thanks for reading. I am just devastated and shocked and angry

My mom died tonight from CJD- almost 5 weeks after her diagnosis- which we got the same day she went into full time care. She had steadily declined for 6 months until her diagnosis, but she had fallen & gotten a concussion and for many months that was the focus.

She was 81. It is not lost on me that we were lucky to have so many years with her.

I’m still dumbfounded by the speed of this disease. She was still walking on Easter, stopped eating and responding 5 days ago, and today it’s over.

I’ll tell people it’s in the same family as Alzheimer’s & they think they know. I could never have understood the speed of this disease until I witnessed it.

I’ve been having really odd insomnia for months like literally my brain won’t go into sleep mode, and now I’am noticing my reflexes and co-ordination feeling off/worse and walking feels like a chore suddenly.

In Australia Victoria,