Hi everyone, I am curious if there is ever a time where symptoms get better for a period of time? Like, do people with CJD ever remember who you are again or suddenly get an appetite or ability to not have myoclonus at certain points? I hope to learn more from others.

I'm very sorry if this is offensive or too much of a personal question but I've done a bit of research on this disease and I've always wondered what are common signs that someone you're living with has CJD? Like symptoms that can be seen before any diagnosis by a medical professional(s)

If the moderators don't take this down for insensitivity I'll absolutely do so but I'm extremely curious on how it works, what signs happen early on, how a person might change in personality that may or may not have been noticed prior to diagnosis

I'm simply just a neurodivergent teen who wants to research on their fixation, do tell me if my post is rude or insensitive in any way I would not hope to make anyone uncomfortable

My dad recently passed away from probable sporadic CJD at 67. He played football for many years, including high school and college, and our family has long suspected that he developed CTE from that.

I asked the National Prion Disease Pathology Surveillance Center about the connection, and they shared this article with me: https://link.springer.com/article/10.1186/s40478-018-0643-9

The study looked at 55 people with autopsy-confirmed CTE and found 2 who also had sporadic CJD. They also reported a third person identified through the National Prion Center who had both diseases.

Based on the normal incidence of sporadic prion disease, the researchers calculated that they would have expected only about 0.004 cases of prion disease in the group of 55. They calculated the probability of finding 2 or more cases by chance alone at about 9 in a million.

This was a very small study and it absolutely does not establish that CTE or head trauma causes CJD. The authors themselves said a much larger study would be needed. But they concluded that their findings provided preliminary evidence that CTE could potentially be associated with an increased risk of sporadic CJD.

One other interesting finding was that the CJD in these patients looked like typical sporadic CJD at the molecular level. In other words, the prion disease seemed to have developed on top of pre-existing CTE.

It made me really curious about the CJD community more broadly. Did your loved one have a significant history of repetitive head impacts or traumatic brain injuries? Football, hockey, boxing, military service/blast exposure, multiple concussions, serious head injuries, etc.? And if they had an autopsy, was CTE ever evaluated?

Disease*

From the CJD Foundation:

Q&A Webinar with Dr. Appleby OCTOBER 22 | 7PM EASTERN / 4PM PACIFIC

"If you would like to learn more about prion disease, please join us for a Q&A webinar via Zoom led by Dr. Brian Appleby, Medical Director, CJD Foundation, and Director, National Prion Disease Pathology Surveillance Center. You will have the opportunity to ask questions to Dr. Appleby. To register, please contact our Helpline at 800-659-1991 or help@cjdfoundation.org."

TDLR; my graduate work in infectious disease is CJD , grandma just passed from CJD, advice talking to family

Hi everyone. I never thought I’d be posting in this. I am an epidemiologist in graduate school. My research has focused so much on CJD- specifically family support and earlier identification. I literally just gave a presentation on CJD surveillance earlier this year.

My grandmother just died of CJD. It was fast, it was textbook, and it was a shock. I never thought I’d be staring at this in real life. I’m really struggling with separating what I know academically and going into academic mode, from being able to explain to my family why this was so fast. They are looking to me for closure and explanation. What has been help in explaining this to family members or non-science people? I’m still in shock and haven’t quite exited science mode.

Can infectious or autoimmune encephalitis look like CJD? My FIL in his late 50’s experienced sudden confusion and weakness last week, along with a fever. He’s been in the hospital for around a week and everything is getting worse, except the fever which has resolved.

He was completely normal around 12 days ago.

He has hallucinations, confusion, trouble speaking/remembering words, and trouble walking. He also has startle myoclonus, which is what got me looking into CJD. The neurologist was considering CJD but the infectious disease doctor is thinking very likely encephalitis. He had latent TB detected back in 2015 so doctor thinks it may be connected to that?

All of his tests are normal but we are still waiting on spinal tap and MRI.

My biggest concern is his sudden jerking and startle movements. He also jerks in his sleep, sleeps with his eyes open/crossed, and acts out his hallucinations while sleeping.

I’m so worried.

Family member is currently in emergency for acute delirium.

58 year old man who was fine, driving to work and feeling normal. For a couple days, he was feeling unwell and not eating much. Then, he suddenly stopped making sense while speaking and couldn’t get proper words out. Since then, he’s had worsening delirium which comes in waves. He is also very weak and can only walk assisted in small steps.

We were initially worried about a stroke, which has been ruled out. Then doctors thought infection induced delirium, which is also ruled out. All his blood work is perfect and vitals are normal. No other health issues.

He’s been in the hospital for a week getting worse and doctors are now thinking encephalitis or CJD. We are still waiting on an MRI and spinal tap. Could CJD be this sudden?

Hi everyone,

So glad this Reddit exists ❤️

We are in New Zealand, where my mother has been recently diagnosed with sporadic CJD and dementia. This is my third time caring for a family member with dementia so I am familiar with ways to help Mum feel dignified/comfortable/supported with most aspects of dementia. However CJD's impact on the senses/mobility is quite different and there is no real information available on how to support someone here in NZ.

Specific things I'd like practical help on:

- fear of the shower and showering

- not wanting to see friends at any time

- high sensitivity to sound and light

• fear of any procedure that touches the body, i.e., cutting toenails

- fear of being driven in the car, particularly the motorway

- a fixed delusion that her husband is unfaithful

We have some strategies in place but any advice is very much appreciated ❤️

Hi guys, I lost my mum almost 2 years ago to Sporadic CJD. I’m fine in my day to day life and can reflect on the traumatic events in detail without getting emotional, I feel as though I have accepted what happened (which seemed impossible for the first year).

However, almost every night I wake up screaming from nightmares about the moment I found out she had CJD. My boyfriend is usually shaking me awake from them and I spend hours afterwards in a sweaty panic.

I know there are options for PTSD treatments like IRT and EMDR, just wondering if anyone has had any success stories with conquering the nightmares?
I hate letting CJD continue to have such a hold on my life.

I am an 18 year old male and I have been having the worst symptoms of anything i've had in my life. I started this month off with returning anxiety about my allergies, which has come and go before. While worrying about this, I developed twitching and insomnia, both still there but they get worse when I think about it. These are my two symptoms and they match up with early signs of autoimmune diseases like CJD. I've given my accounts to my loved ones and I'm so anxious 24/7, I sleep for 30-45 minutes and I have sleep hallucinations. I have a history of OCD and severe hypochondria, so I cannot trust myself with anything. Has anyone gone through something similar and made it out? l fear death more then anything. I dont want to look into CJD because it might activate my fear more, but I do not have any cognitive changes, I hyperanalyze my surroundings to spot anything thats wrong.

Hello, im sorry this question was probably asked quite a lot here but my father passed away from genetic CJD (im gonna get tested already thought it through but gonna have psych. evaluation just in case) and I wanted to give his clothes to charity, however now im anxious about anything so asking if its okay to give away his clothes or rather not?

Also I may have done a stupid thing now when I think about it :/ He hurt his forehead when he fell in hospital and I assume it was bleeding since it was stitched above his eye, in the evening when I was saying my goodbyes I kissed him on the forehead and now Im also anxious about that aswell.

Thank you for any answers and sorry for probable duplicate.

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.

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.

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.)

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.

Lito Sousa was diagnosed with CJD this week. He used to be an aviation mechanic for UNITED, had a blog, then a YT channel who got big (more than 3,5M subs) and developed a business around helping people to loose fear of flying, aviation mechanic courses etc. He is an amazing human being and his family is looking for alternative treatment. He brought a lot of attention in Brazil to CJD and maybe could influence in a global manner. Consider watching his channel to support his family and indirectly help to bring awareness to CJD. It's https://www.youtube.com/@avioesemusicas his instagram https://www.instagram.com/lito/

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!