One In a Million: A CJD Documentary

[@the.vvitch]

Sending love to all of you. I am dedicating my life to studying prions and the diseases they cause- humans and other mammals. I promise to each and every one of you that I will personally do everything in my power to raise awareness for TSE’s, and search for a cure. Many scientists are eons ahead of me, but I have a natural proclivity for understanding molecular microbiology, and I am working hard to catch up with them and join in on their effort. One year until my BSN, Two years until I finish my Bachelor’s in microbiology. Then on to apply to a PhD in molecular microbio. This is the greatest calling of my life as a future nurse scientist, so please know that there are people out there fighting for your loved ones. Not just me, either. I hear all of you. I am riveted by this phenomenon and will work tirelessly for these patients. We need a cure, and I believe we can find one. I believe that many cases in the last few years of alzheimers and dementia are actually due to vCJD from the late 90’s epizoonotic breakout of BSE.

[@lighthoused.]

Good luck on your journey! I look forward to seeing your name in the textbooks one day :)

[@melisentiapheiffer3034]

Good luck. ❤

[@bernicesokolowski]

CJD is the most horrific disease that anyone can get. I lost my Darling Sweet brother to this disease back in 2002. To watch on hopelessly while the person you love with all your heart goes through this illness is the most heartbreaking experience I have ever had to endure. To everyone that has a loved one that has been diagnosed with this disease, I give you all the love I can possibly give to you because I understand what you are going through.

[@raymondbigdog3745]

I lost my father in 2004 I lost my brother in 2013 and my second brother this year 2018. Yes, it is the most horrific and the cruelest disease.

[@adulthumanfemale8666]

@@raymondbigdog3745 Do they have the familial type of CJD? My mother died from the spontaneous type in 2016. Diagnosed on my birthday and died 3 weeks later.

[@masterwelder65]

@@adulthumanfemale8666 Hi when my father passed in 2004 they told us it was sporadic CJD. But when my brother Daniel in 2013 we all got tested and said it was familiar. Since then my other brother Jaime passed this year on March 13.

[@adulthumanfemale8666]

@@masterwelder65 I'm so sorry to hear that. I've read that the familial type develops when people are in their 50ies. How old was your father/brother?

[@masterwelder65]

@@adulthumanfemale8666 My Dad was 65 years old my brother Daniel was 47 years old he was the second oldest of the 5 siblings my brother Jaime was 49 years old. That leaves me 53 the oldest of the siblings my sister 46 and my youngest brother Javier 48 years. My sister and I don't carry the gene mutation and my brother Javier is a leave up to God person. I had to know and my sister wanted to know if she carried the gene. The most painful was my brother Jaime he left to Daughters 13 and 18 teens. They were all very devastating but leaving behind 2 little girls my nieces was almost too much to bear.

[@figuhrowcarter6677]

My mother is in her final stages with CJD and I feel so alone and helpless. Your video made it possible to get through the night thank you for sharing.

[@terihansen2183]

my thoughts and prayers are with you. i just found out that my brother who is a year older has cjd. it's been two weeks since you posted, how are you and your mother doing?

[@SusanA1056]

I'm so sorry you and your mom went through that. I'm praying for you & your family.

[@MikeJohnson70]

So sorry for your loss, my wife has just been diagnosed with CJD....bless you for making this documentary

[@sylwiapiluszyk5426]

My daddy has been diagnosed with sporsdic cjd just 6 weeks ago and passed away a week ago.This is such a hortibble disease.He got deprived off all his abilities. Rest in peace my dear daddy....

[@JoseMartinez-qr9pj]

Soon this disease will be cured, soon. There is hope, and I want to aid in the process. I’m extremely sorry for all of your losses, live life to the fullest. 🙏.

[@СветланаТрофимова-у2щ]

Эта болезнь, не научиться лечить, это не возможно

[@Buldzi]

Hey man, I know it's been a long while since you commented, but I hope you're hanging well, my most sincere condolences

[@RhiannonRaven]

My Mum was diagnosed with Parkinsons and then they changed their mind and said it was Lewy Body Dementia. She got very ill very quickly and died after 6 years. Other than the time she was ill for, everything that she went through looks exactly the same as this vile disease. Blessings to everyone who has been affected by any of these horrific neurodegenerative illnesses.

[@Chocomare]

Originally my LBD husband was thought to have CJD. I spoke with Dr. Geschwind and sent him David's MRI's on CD. He confirmed that it was not CJD and a week later, Dr. Hales from Emory-Wesley Woods in Atlanta made the LBD diagnosis. I lost him 22 months later. I don't wish either disease on anyone.

[@RhiannonRaven]

I am so sorry and I thoroughly agree@@Chocomare

[@katieb1111]

This documentary was very well put together and informative. It was hard to watch the footage of your mother slowly getting worse, I felt very sad for her and also for you and your family. But I appreciate your bravery for including those moments for the sake of educating others. I hope that scientists can continue to research this disease and one day find a way to cure it. Thank you for your hard work on this film!

[@MountatinMusic0]

My Uncle just passed away from CJD. Mike was an amazing musician and had been playing his whole life, finally after years i joined his band and was able to finally play on stage with him. these were some of the greatest moments in my life. we played until he was no longer able to. My uncle Michael went straight from our last gig to the hospital where is was diagnosed with CJD. Mike Passed away a few months later. I will always miss you Mike and everything you ever taught me.

[@robynturei5592]

Where are you from may I ask, my brother has CJD as well.

[@wistolla]

Sporadic,Varient or CJD

[@MountatinMusic0]

@@robynturei5592 Calgary alberta canada and i am so so sorry to hear this..

[@MountatinMusic0]

@@wistolla it was CJD

[@tonyparton3522]

Trevor, I watched your documentary soon after my fathers diagnosis of probable CJD in late Oct 2017. We lost Dad only weeks later - two days before Christmas. Information is so hard to find (especially in here in New Zealand) and you documenting your mother was so very helpful for me to gain an understanding of the disease and what my father and we, as a family, were going through at the time. Although very late, I wanted to say a huge big "THANK YOU" to both yourself and your amazing Mum for documenting her struggle over a very difficult time for you all. You are a truely special person for producing this.

[@robynturei5592]

Hi Tony, I read your comment about your father having CJD and I am very sorry for your loss. My brother was diagnosed with CJD in early October but may have had signs of the disease before then. So we as a family are trying to pinpoint where he could've contracted the disease from and so far as we can see my brother and sister and his wife and friends went on a cruise at the beginning of 2018 and then my brother and his wife went to Bali about the middle of this year, during the year he had an accident at work and fell and hit his head and punctured his lung which he needed a blood transfusion, he also had his shoulder operated on (rotating cuff) or something like that 😂😂 So these may have been some of the factors which may have caused my brother to have CJD. We are waiting on tests results to come back but in the meantime he's gone back to hospital because he's got pneumonia which is weird cause it's not cold. Can you please tell me if your father went on any holidays or cruise or had any accidents before he became ill. My brother lives in Levin.😢😢😢

[@BenTh17]

My best friend died from this over the summer. In May, he started having issues using his left hand. He thought he hurt it at work. Within a few weeks, he started having crippling migraines. Soon he stopped responding to texts altogether, barely communicating (very unlike him,) and shortly after we got the diagnosis. Late in July, he passed away, and the decline over the last few weeks of it was devastating. It has been very hard to process. He was only 32 years old. Thank you for making this documentary.

[@MrsSurrealista]

I’m very sorry for your loss. May your best friend rest in peace.

[@smokinjoe2539]

I lost my wife of 39 years to this dreadful, cruel disease two months ago today. She had just turned 61. We only found out it was CJD about a week before she passed. Very hard, to say the least, watching someone you love be taken away by this. Especially since they are taken away even before they are gone. It seemed to start off with stroke-like symptoms on her right side about four months prior. During the last month, the decline was very rapid. Thank you for this video. It's nice to know we are not alone.

[@claudiavalencia6415]

My mother was diagnosed with CJD last month and she is quickly declining, it’s so hard and truly heartbreaking. Thank you for this documentary

[@mhuddle4443]

So sorry to hear you are going through this. I just lost my Dad a few weeks ago to CJD. This time last year he seemed fine. 10 months later he was gone. Was hard watching him decline so rapidly, as you are experiencing now. Stay strong and know that spending moments with and loving on your mom will be comforting to her. And remember you aren't alone in this. Wishing you peace and comfort as you go through this with your family.

[@MimiBender]

Hi sweetheart. My mom has been diagnosed pretty recently too. I share all those unbelievably difficult feelings and steps of the process with you. My mom is 62. She’s at the hospital right now because of an urine infection that affected her all well “state”, if I can evenly put it that way. Please contact me ❤ We’re só alone, I feel so alone sometimes, when I get exhausted by talking, thinking, doing, doing, doing, planning, imagining, getting afraid, crying, that time I feel so alone. Please write me

[@SErdm-ed6bn]

@@MimiBenderhello my mom diagnosed 1 month ago and declined very quickly. She is home right now and is unconcious, can’t move and speak. We don’t know what kind of death is waiting her most probably she will have saturation problem or infection

[@MimiBender]

@@SErdm-ed6bn Hi @SErdm-ed6bn I would really really like talking t you about that a little more. I know about that. All folks, what we have had been facing we’ve just changed it. We decided so.

[@erpthompsonqueen9130]

Thank you. Watching and Listening from Alaska. This is impacting my family right now. 💔

[@chellesama8256]

I'm so sorry to hear this. Grace and peace be upon you, and carry you through the times to come.

[@erpthompsonqueen9130]

@@chellesama8256 Thank you.

[@LuciThomasHardylover-qx6ts]

I'm really sorry. Can't imagine what that must be like. I've nurses people at the end stage of Parkinson's and Motor Neurone and it is heartbreaking. Love and prayers from the West of England ❤️I

[@kelliewilborn9154]

I’m in AK too.

[@erpthompsonqueen9130]

@@kelliewilborn9154 👍

[@yesterdayitrained]

This is such an important documentary- these are the kinds of things we all need to care about. I was diagnosed 30 years ago with a very rare, chronic, non-life-threatening, condition. To find other people who understand, doctors who have knowledge and empathy, and to know people “have your back”- it means the world. To everyone who participated in this, thank you. This is what life is about. To all those who have lost loved ones to CJD, please accept my sincere condolences. I have hope that there will soon be a breakthrough- something that will help those with CJD, Alzheimer’s, Parkinson’s, ALS, and Huntington’s disease. Every life is important, and every disease, no matter how rare, is important too.

[@lyndastevens4664]

My father died on May 18th, 2011, just 21 days after CJD diagnosis. His autopsy revealed that his was the acquired variant and likely originated from tainted medical equipment. Interestingly, we were denied hospice care by several institutions due to the CJD diagnosis. We were forced to “hide” his diagnosis and have him admitted with “advanced dimentia”. This was a nightmare for all of us. We need to bring this disease into the light. I️ can only imagine the angst that a genetic variant diagnosis would create. We must help.

[@cottonmather2563]

I'm sorry for your loss. But, pardon me if this is insensitive to ask, how do you think he acquired it? Have you ever followed up with any investigation, or have you looked into any legal recourse? You deserve some answers.

[@lyndastevens4664]

Cotton Mather we believe he contracted this from a pig skin graft he received to treat a skin cancer wound on his forehead. I️ researched this extensively and found many sources identifying cranio-facial procedures as a suspect route of infection. We were told it would be an exhaustive process to further pinpoint the infection source and we would incur significant expenses trying to locate the tainted equipment. We just didn’t have the fight in us. As despicable as the familial version of CJD is, knowing that medical tools are not able to be sanitized from this disease haunts me. Common sterilization methods do not kill this germ, and short of requiring virgin medical tools for every operative procedure, every surgical patient is at risk. Your work in the genetic CJD space is admirable, and I️ hope it can also shed some light on the other forms of this devastating disease.

[@Runeman40055]

Stop.

[@lyndastevens4664]

Runeman40055 stop what?

[@Runeman40055]

Jumping on this bandwagon that everyone getting prion disease gets it from tainted bovine food products. A very small minority- something like less than 5% of CJD is variant to begin with, and the BSE outbreak in the UK was over 32 years ago! As a medical student who has a particular interest in this subject, it is frankly annoying when people draw links between things without doing the research beforehand. Sorry for your loss.

[@nono-gw7qm]

I’m watching this documentary again. So sorry to see a lot of the comments are about conspiracy theories now. Just wanted to let you know you did a very good job at this documentary, and I’m really sorry for your loss

[@leighferris4652]

My husband just got diagnosed with this May 4th, first sign something wasn’t right was middle of March. Started with insomnia. Then what we thought was restless leg syndrome. Memory loss came week or so after that. This just happens so fast. It’s unreal at how fast. He was working in March. Walking at Easter and could fix own plate. Today he is in hospice. Yesterday he turned 42.

[@Mylife-yd9xq]

Was it hereditary or did he eat something that may have caused the disease? Sorry for your loss.

[@1houndgal]

So sorry.

[@lisamlafrance]

I am so sorry. This must be so difficult. By now he has probably passed. I am sorry. 😓

[@rupsamukherjee3679]

Such a sad condition. Stay strong

[@MimiBender]

All my love to you ❤

[@alohafromthe3033]

I have tested gene positive for Huntington’s Disease, which is also always fatal and has similar neurological effects. I watched both my mom and grandmother slowly decline over several years. CJD kills much more quickly, but that can be a blessing because the suffering isn’t prolonged. With these genetic conditions, the only thing worse than knowing is NOT knowing. My husband and I have chosen to not have children. It’s the one thing we could do to ensure that this disease doesn’t continue to spread throughout our family.

[@sidstovell2177]

Bless you for not passing on this horrible disease. I wish with all my heart that you could be cured. Best wishes.❤

[@pilske20]

What a good docu!! It hits me hard! We have had exactly the same process with my mother. She died within 7 weeks. From dancing with me to death. The day after her death my daughter was born. 2 year ago. This desease is really really devistating. Please if someone in your familie has this, do the autopsy so we learn to know this desease better. All best wishes from the Netherlands

[@Mylife-yd9xq]

How did she contract the disease by injestion or bad medical practices did she eat cow brains or bone marrow or was it the nurses doctors not using brand new equipment sorry for your loss.

[@hollydaugherty2620]

@@Mylife-yd9xqMost cases are SPORADIC. Random. Not acquired from outside sources.

[@DavidVega-wi5pr]

My heart truly goes out to those who suffer this or lost someone no words can make it any better and those who le themselves be filmed in the pit of it so people can learn and see about it are a special type of hero

[@michellegliko779]

Thank you for this very important documentary. Shedding light on what has become a very important piece of many people’s lives. My mom is on hospice with a CJD diagnosis. I am so interested in doing something to help research so people won’t have to suffer from this horrific disease.

[@marieroe5007]

Am so sorry to here this

[@robynturei5592]

Where are you from may I ask, my brother has CJD.

[@mariquinn]

@MichelleGliko Have you considered genetic testing? My father recently got diagnosed cjd and we have no other family members that have passed from it. But now I am left wondering what is going to happen of me and my sisters.

[@Moleanimationchannel]

Enjoy your life every moment because you never know what’s coming for you and your loved ones.

[@CarolineLockMusic]

When the camera panned past the table of tributes, my heart sank. Michael Mendy’s picture was on there - poor kid died from Sporadic Fatal Insomnia when he was just 16. Heartbreaking.

[@teariet.tekken-wolffenn5881]

I was reading about that story today. My son is 14 and I pray something like this never happens to me. I rather take it gladly for him.

[@СветланаТрофимова-у2щ]

Да бедный мальчик, умер за 3 года

[@papaversomniferum5247]

I first heard about CJD through the xfiles and never thought about it again, until I discovered more about it, including it being a prion disease, I found that out from hearing of local deer populations having their own form of it... it’s sad, and there has to be a cure, sometimes I wish I could be a scientist and do something that matters..

[@pragmatic7green]

Andrew ? Yes me too!!

[@hoodoo.hillbilly]

I wanted to take a moment and say Thank you for this documentary, I’ve found it very helpful in understanding what happens.

[@HolcombvilleEntertainment]

Glad it was helpful!

[@mariekatherine5238]

I would want to know so that I can make arrangements for my care!

[@graceful6894]

My brother was just diagnosed with Sporadic CJD two days ago. He is in the hospital and will not be coming home because of how fast it is progressing

[@Mylife-yd9xq]

How old is he so sorry this disease should be in every public school to teach everyone about it I hope he fights strong just pray to god jesus virgin mary how did he contract this disease did he ingest something like cow brain or marrow or was it bad medical practices such as using bad used equipment or blood transfusion.

[@1houndgal]

@@Mylife-yd9xq Sporadic is not from what you eat or transmitted. It is something that is genetic or spontaneous mutation.

[@LuciThomasHardylover-qx6ts]

@Mylife-yd9xq don't you think that it's more than a little tactless and selfish sounding that every single person who has shared their personal story of dreadful fear and loss has had you pop up wanting to know how to avoid it yourself? Would you be that crass in person? You send your condolences and move on. They are not the people who should be asked to speculate like that. I'm shocked, even by internet standards.

[@llamuth1919]

Hello to all the fine folks in this program. I came across the program by accident and the title caught my attention. I was blown away! The awful anguish these loving families have sustained in watching their loved ones succumb to this terrible disease is heartbreaking. I can't begin to imagine what they went through. My heart goes out to all of them. I know I'm old and decrepit, but since I live in the greater Cleveland area, I was wondering if there is anything I could do personally to help out. I'm retired and broke, but I would certainly be willing to help. Please let me know. May God bless all of you and your families.

[@HolcombvilleEntertainment]

secure.qgiv.com/event/classification/243360/

[@maryamdanbudakecik]

My mom was diagnosed with CJD 4 months ago. Now she has no reaction as we speak to her. She also sleep a lot and the movement is a lot less. We've been taking care of her at home.

[@wistolla]

Updates?

[@persephone2706]

@@wistolla I don't mean to be rude, but she's very surely passed months ago.

[@TheBigwheels11]

@@persephone2706 maybe not. My buddy's 41 year old wife was diagnosed I'm May. She is still with us, can still talk. This disease is awful. FYI, she doesnt eat meat.

[@СветланаТрофимова-у2щ]

Подскажите пожалуйста, сколько она болеет по времени?

[@СветланаТрофимова-у2щ]

Hello, I'm from Russia, please tell me how your friend's wife was, when she got sick and how is she now? How long have you been ill?

[@teariet.tekken-wolffenn5881]

I know to lose your mum in such a terrible way like you did is even tougher. My heart goes out to you. But I respect and admire your courage to do this documentary that will shine some light over these horrible diseases. This is your mum legacy. Giving others the opportunity to learn and create awareness, and wherever she is, I'm sure she is very proud of you. Thank you.

[@neweyes777]

Both My Father and His Father [ My Grandfather ], died of Parkinson's Disease, and both passed within 3 yrs. of their diagnosis. God bless these families.

[@sangeeta4645]

I am from Mumbai, an I lost my mom in 2019 due to sporadic CJD, We family members suffered a lot due to lack of knowledge about CJD many doctor just fooled us by giving wrong prescription and my mom condition worsen, and finally when it got confirmed she has CJD she had lost her memory and was bed ridden... Worse thing ever could happen to any love onces, still now I ask God why my mom was choosen for this disease, I can understand the pain of people who had lost their love onces by CJD. 🙏

[@wethepeople1680]

Sorry to hear that..does it run in your family.?

[@madeleinemagdidavid]

My best friend has first sign in september. Today she is in the hospital without speak and move. Her family got the info About CJD 5 days before. My heart is out for her.

[@leonardograziano435]

Have a question: How was it in the. detected? What were his complaints

[@madeleinemagdidavid]

First insomnia , second shake her hand( mostly right side)

[@wistolla]

@@madeleinemagdidavid updates?

[@madeleinemagdidavid]

@@wistolla she passed away quite quick after doctors find out the disease. 😪

[@amber_Forever16]

How old was she? I’m sorry for your loss 😔

[@sharonwoodard1008]

You are such a good son Trevor to such a great mom. Thankyou for sharon your story. Prayers and hope always

[@mikewatte4478]

Thanks for your video. We will all die some day and worrying wont change anything. None of us know when we will go but what is important is enjoying the time we have. We spend our whole lives worrying about buying a house and paying for this and that and in the end we die and somebody takes everything we have worked for. Forget the new car and spend your money traveling the world and enjoy life.

[@amother31593]

God bless you brother 😭 My heart is broken for you and others who've went through this nightmare. I'm just learning about this. I can't believe in 2018 the aren't answers on this. My heart goes out to you. Thank you for making this documentary 💖

[@rella713]

Thank you for this amazing documentary. I now finally felt ready to watch it and it reminded me so much off what my dad and my sister and me (looking after him) had to go through half a year ago. I showed this documentary to my partner (who had to stay behind in the UK when I went to look after my father in Germany) and I finally felt like he could understand what we went through. Thank you so much for documenting this. It couldn’t have been easy to go through so much trauma and documenting it at the same time.

[@kimthompson6029]

My mother inlaw passed away from this,it's a truly heartbreaking desease. 😢

[@andresaenima9938]

can u tell us more about how it is started and how long

[@kimthompson6029]

@@andresaenima9938 she passed away a few months after showing symptoms, hallucinations, they thought she had dementia at first. It's very sad

[@andresaenima9938]

@@kimthompson6029 yes indeed im so sorry

[@320ljohnson]

Thank you so much for making this documentary.

[@brodyhanna4642]

My mother passed away on August 16, 2017. It's almost been a year, and I miss her everyday. I'm sorry for anyone who has to go through this or have to loose someone to this shitty disease. My heart goes out to everyone going through pain and just know, it will get easier.❤🙏

[@donnarupert4926]

Brody Hanna••••May God bless and keep you ❤️. I lost my Mom in 1996, I still miss her😢She didn’t have this horrible disease she had another one Cancer!! I’ll keep you in my prayers 🌈☺️❤️

[@sangeeta4645]

Even my mom suffering from CJD.... n m going through same pain.... It's the worst disease in the world....

[@СветланаТрофимова-у2щ]

Это ужас

[@СветланаТрофимова-у2щ]

Это самое страшное и ужасное, что может быть с человеком

[@ericpetosky7744]

We just lost our mother on 8/15/18 from CJD. It took about 8 weeks from the first time i took her to the hospital to when she had passed. She was perfectly healthy and active at age 77. It's such a horrible disease and my thoughts are with all of you who have lost a loved one to CJD.

[@DannyD-lr5yg]

14:23 Even though her cognition is rapidly declining, you can see the raw human emotions here. She feels loved, she feels worried, she doesn’t want to be abandoned, she feels relieved. The way they’re all speaking to her throughout is so heartwarming. Even though she likely didn’t understand much of what was happening by this point, she could surely understand that she was in a calm environment full of laughter, joy, and patience, where she was spoken to lovingly and tenderly 🥺❤️‍🩹

[@somnuswaltz5586]

None of your business what was going through her mind at that time. That's for her family and loved ones to speculate about. Show some respect you freak

[@sadieandbean]

Very educational and a wonderful tribute those who have lost their lives to CJD

[@SeriousSchitt]

You’d think if this ‘prion’ folded the wrong way, then it bumped into it’s brother, you’d think that the brother would straighten it out and it would come good, but whoa no, the whole damn family of prions have to go bad WTF?

[@user-zy4wv7yx1z]

I always wondered that too. Like you said, why don't the "correct" prions straighten out the "incorrect" ones. Why is the misfolded shape so dominant?

[@pappanalab]

I figure in this case it would be because of chemical reactions between the two proteins. As far as I understand, and I could be wrong here, but misfolded proteins a happen occasionally and your immune system has ways of mopping them up. Most don’t become prions and spread to others.

[@kathleengarcia5008]

My sister Carol passed away 2-21-2020 from Jacob's .... I miss her terribly! She kept telling her drs. that she didnt feel right. Passed it off to nerves. I remember one night when I was leaving I was asked if I was ok. I turned & said "The light is gone from her eyes" She was a woman who walked every day, never smoked, yoga a couple days a week (she never missed a yoga class) She loved to dance and go on vacation with her husband, daughter, son in law and the loves of her life, 2 beautiful grandchildren. Summers spent in their house in Rockport. When she passed they had a vacation planned in Aruba for all of them. None of us ever heard of the disease ... It all was so fast! 💔

[@somnuswaltz5586]

Gee, I never heard of "Jacob's" disease either. Can you describe it for me please?

[@Mylife-yd9xq]

So sorry for your loss did she eat cow brain or bone marrow or was it bad medical practices such as not using brand new equipment or bad blood transfusion.

[@hollydaugherty2620]

@@somnuswaltz5586Did you not watch this video you're commenting on??

[@somnuswaltz5586]

@hollydaugherty2620 no such disease called "Jacob's" exists.

[@mariannebahner5059]

What an informative and touching documentary.

[@giselaclarisabegazovalcarc6413]

My husband was diagnosed CJD in March 2020.All this is very hard, it is soo cruel. I understand all of your Sorry my english is not good. I am peruvian.

[@СветланаТрофимова-у2щ]

Муж ещё жив?

[@andyandcallie]

I'm so sorry.

[@grobanite4ever85]

Lo siento mucho!

[@amber_Forever16]

How are You doing? I’m very sorry for your loss

[@Mylife-yd9xq]

Como lo contrato la enfermedad comiendo los sezos de vaca o los huesos o comio solo carne de vaca porque dicen que puedes comer cabeza el cuerpo patas y no puede pasar la enfermedad o tambien los venados la train.

[@richadm5404]

Sorry for your loss. She seemed like a nice lady. All the best.

[@HP-fn4bo]

My grandmother died of CJD in 1984 six months after I was born. My mother couldn’t visit her the last few months because it was so traumatizing.

[@MimiBender]

Sending all my love for you and the beloved ones who faced all the process ❤ I’m exactly at this point in my life ❤

[@shellbacksclub]

This is a lot bigger than ppl think.

[@marielyfelix8182]

soy de México y mi hermana falleció de CJDF el 7 de junio de 2017 ='( a solo 11 días después del diagnostico, ella cumplió en el hospital 40 años, muy joven =`(, después de saber el diagnostico de mi hermana supimos que mi padre también falleció de lo mismo, en el 2009, y otra hermana tiene el gen =`( Dios quiera que los neurólogos, médicos, genetistas, psiquiatras y toda persona involucrada en esto, encuentren una cura para esta maldita enfermedad.

[@happysloth3208]

Interesting documentary my grandma recently passed away from having frontal lobe Dementia. She first lost the ability to talk and when I last saw her, she was unable to walk and eat on her own. I’m glad that this brings awareness to these terrible diseases.

[@biasedjedi4353]

Prion diseases terrify me. No one deserves such a horrible fate.

[@СветланаТрофимова-у2щ]

Да согласна, такой болезни не должно быть

[@jeffreycox4928]

My dad passed away from cjd in 1996. He worked on a farm and was also in Korea during the war. We have no idea where he got it. Possibly blood contact with bse cattle, or tainted meat in Korea. There were signs for years something was wrong, hallucinations, trembling and babbling speech. When it finally grabbed him fully, he was gone in about 30 days. It was awful and no one should suffer that much right before they pass. It was kind of under the radar at the time and he was suspected of having cjd. It was not confirmed until autopsy on his brain. I miss you pop.

[@СветланаТрофимова-у2щ]

Несколько лет начальные симптомы это сколько лет?

[@easypeasy1216]

My momma died of CJD in 2009. We donated her brain to the Prion Center in Cleveland, OH, where the diagnosis was confirmed. Hers was sporadic CJD. She went into the hospital January 1, died February 9th. What a horrific way to die. It was heartbreaking. At one point, mommas eyes were huge and she laughed uncontrollably, hence the name the Fore Tribe gave the disease, Kuru (laughing disease).

[@elainekral9289]

Tammie Renz uuuu

[@eartheternal3565]

Tammie Renz I'm sorry for your loss. We take so much for granted.

[@jargon999]

I believe my father is going through this now. He started acting odd and was acting a bit confused. It's been one week since we took him for tests in the hospital and it's like a freight train. Everyday is worse than the one before. Although the tests have not come in yet, we believe it is CJD. I hadn't even heard of it before my sister let me know a few days ago. Thank you for making this documentary, it was incredibly hard to watch but very informative.

[@wistolla]

Any updates?

[@jargon999]

@@wistolla My father passed on August 20th, exactly 4 weeks since we brought him to the hospital and 2 weeks after the official diagnosis. I can not even make sense of it. Everyday was a change. Started with confusion and odd behavior, slurring words, talking slowly, not being able to walk without assistance, loss of motor functions, and then loss of speech and ultimately fell into a coma and within a couple days was gone. Fucking nightmare...

[@wistolla]

@@jargon999 rest in peace 🖤

[@eljefito94]

@@jargon999 Sorry for your loss, may he rest in peace

[@jargon999]

@@eljefito94 Thank you

[@vaishali2296]

Blessings! And thank you for creating awareness.

[@toymomtoytime677]

So sorry for your loss and your diagnosis. My best friend of over 60 years died October 14, 2018. So quick, so cruel.

[@Dookie69uk]

Now imagine, like myself who lived in the UK during the BSE pandemic where every day from 95 was like living with a ticking time bomb 1/2000 UK people born from around 1985 carry the vCJD prion all gene types are also susceptible. MM/MV/VV we started the second wave of deaths around 6 years ago. Also vCJD is also blood borne as well so everybody has ever been to the dentist or had a blood transfusion are all at risk. Obviously some medical diagnostics are much more dangerous like any brain surgery, eye surgery, endoscopic procedures especially colonoscopy's are the most risky. It is a living hell having lived through it and having some of those more risky procedures. I suspect though that the vast majority of Americans don't even know what we have had to endure because of government greed and the beef industry's greed. Money is worth more than life.

[@elizabethsuarez3914]

My cousin just passed away in January from CJD. She spent the last 2 months of her life in the hospital. She just turned 45. 😢

[@paulflint6254]

sorry to hear that

[@sylwiapiluszyk5426]

So sorry,my dad was only 61,je just passed away a week ago.Just 4 weeks after diagnosis.Its very heartbreaking,my heart will bleed forever.He was such a happy person,full of life and energy.All this stsrted with depression eventually.Love u daddy so much.We will meet again❤😭😭😭

[@donnarupert4926]

Ooo, I’m so sorry 😢for your terrible loss❤️

[@javieraramos4847]

Sylwia Piluszyk my heart breaks for you... your dad will always live in your heart

[@СветланаТрофимова-у2щ]

Hello, I'm from Russia, can you please tell me how long has your sister been ill?

[@purple_amethyst]

My grandpa had Parkinson's and I watched him go from a very loving man to going off at the drop of a hat over minor things. Like his shaver not being where it normally is. He told my mom one day that the string on his shorts was 1000 ft of gut and he had to cut it. Another day he said he was reading a book and when I came in his room to check on him he said when he closed it and put it down it went into oblivion. I miss that man. My grandpa passed away in June 2014. 3 years later I lost my mom to cancer. I know its not the same as this but the 2 most important people in my life (my grandpa was the only father figure I had in my life) are gone. And it just hits hard sometimes.

[@shawnred5546]

Be strong for your pops

[@virginiapozas1376]

My mom was diagnosed last week. November 2020. Needless is to say how devastated I am. My two siblings and myself are taking care of her.

[@СветланаТрофимова-у2щ]

Сколько лет твоей маме?

[@amber_Forever16]

How is everything going? I’m very sorry this happened to your mom and family

[@luisfernando-mm3jt]

This guy know a lot more than most neurologists ...Stay strong

[@vballchiq798]

Do you find yourself quizzing neurologists often?

[@lindakeffer3082]

My brother died from this disease in October of 1996. It truly is a horrible disease. Watching everyday as he got worse. He passed I think 7 months after diagnosis was heartbreaking. He had a wonderful care giver who read and learned about C.J.D. He wanted to be cremated. When they came to take him we did not know the people who came to get him. We left to go pick an urn and pay for it. The woman and her husband didn't tell us right away, but after we were gone, they put on decontamination uniforms and went back and were spraying him with something. She got up and went to see what they were doing to him. She got really angry and told them THANK GOD THEY DIDN'T DO THAT WHEN WE WERE THERE! You didn't have to be afraid to touch him just use gloves . When we had the service at the cemetery, I just was left with a lot of questions and I don't believe my brothers ashes are over there, and there is no way to prove or disprove if he is. This has driven a wedge between my family and me. They just won't talk about it. It bother them too much to see what was happening to him, so it was my oldest sister and myself who watched everyday. If I mention it they tell me to stop being paranoid about it. Thanks for listening!

[@thebreezelife]

Sweetheart all deceased persons are sprayed with disinfectant

[@wowzeree6789]

My grandpa passed away due to this a few years back

[@amber_Forever16]

Was it familial?

[@DefensorPrime]

Your documentary is an emphasis of why research is vital and requires more funding. Empathy is with your family and others as well. Please don’t give up hope for quality treatment.

[@DefensorPrime]

Thank you

[@qhockeyfan]

My dad died of CJD. It was about a month after diagnosis. Sangamo therapeutics might have one of the best potential therapies for this disease? It's a gene therapy, very interesting. Good documentary thanks for doing this.

[@sharonwoodard1008]

I think your right in this video pointing out this disease may effect more people then known. It's very scary. It makes me sad to see people suffer through this your right your mom is so special and seems like a great mom. I pray for you and your mom and family.

[@monkeystudios1]

I cant even imagine living, knowing that i will develop prions once in life.

[@grobanite4ever85]

Prion proteins occur naturally in the brain for spinal cord it is called Prion protein C the disease happens when the normal prion protein c to misfold into the diseased prion

[@loravansickle9007]

My mom has been declining rapidly since September 2018, still not completely sure but this is the disease they are leaning toward. It's horrific, such a vibrant 74year old reduced to this is so cruel.

[@mattsmith6845]

I have been studying prion diseases. Ask the doctor about an experimental drug (an artificial antibody) named "PRN100". Four people who have been diagnosed with CJD have been given the antibody within the past several months and there has been no known side effects. There have also been more and more compounds found which potentially can halt prions, one of them is called "JZ107". While these potential treatments havent been proven yet, they are the latest in research when it comes to prion diseases, and have been found effective in animal studies. Worth a look at. Good luck to her, you, and your family.

[@inukprasad2692]

how is she now?

[@mitchellwintercat]

@@mattsmith6845 wow, matt, so appreciated the "cliff notes" ty for sharing

[@breannedixon9712]

How is she? Lost my grandma a few years back from lung cancer, only at 59. It was bad but I couldn’t even comprehend this. The good thing is, is that she has people who love and care for her like you. She’s not alone I’m guessing. Love is truly all that matters. I will pray for your family though.

[@СветланаТрофимова-у2щ]

Все бесполезно, против прионов это глобальное разрушение и молниеносное

[@shellbacksclub]

My uncle who i love like a dad just got diagnosed with this 2 days ago. He's the greatest man ever & this feels like a nightmare. Does anyone know of any new treatments?

[@wisconsinblondie2012]

There’s a clinical trial right now. No guarantees but it’s better than the certain alternative. I come from a family who has familial CJD. I have yet to be tested but several immediate family members with the genetic mutation. So you carry that until the gene expresses or starts creating a protein. Tested by lumbar puncture and MRI with neurologist and test results sent to CJD monitoring center in Ohio, USA. If your family member has been diagnosed with active protein, and is in early stages, you should absolutely contact CJD foundation. Case western reserve is running the trial I believe.

[@wisconsinblondie2012]

Keep in mind if it is active protein, time is of the essence!!

[@shellbacksclub]

Thank you, we're in Canada & we were hopeful that he could be brought to Cleveland for the trial... He didn't pass the cognitive test to go unfortunately...​@@wisconsinblondie2012

[@shellbacksclub]

Thankyou for ur response... 🙏🏻

[@andresaenima9938]

can we just make a group to stay in touch for any news around the world i think it would help all of us to know and learn more about this and being together to try to deal with it somehow

[@DavidLeBauer]

Thank you for sharing your experience, it is very helpful to learn about this disease while watching a loved one experience it.

[@taeowynne]

So sorry to all of you. Very informative and touching documentary.

[@taeowynne]

I was hoping none of you had it. Live life to your absolute fullest if you can. I had to learn to grab my good days. It's hard.

[@grobanite4ever85]

I heard about this disease back in 2003. It was because of the bovine spongiform encephalopathy being transmitted to humans as new variant CJD. You can get this from beef.

[@johnnynobuddy1]

Human mad cow

[@bubasaurus]

Thank you for this documentary

[@Linward]

My grandmother died of CJD in 1997. At the time, we were not told of any genetic links, but were told it could have come from either a blood transfusion or perhaps, something she consumed. These days, I do not believe this is one in a million. I think this is much higher. And I suspect we will soon see a huge increase, and some sort of connection with what they are calling CWD in wild game such as deer and elk.

[@ThePaperCreater]

CWD and CJD are both caused by a prion disease, but iirc CWD isn't transferable to humans like BSE is

[@Linward]

@@ThePaperCreater I sure hope it isn't transferable. I was reading an article about it the other day, and while they say it's not transferable, they are advising people not to eat wild game suspected of being infected (which isn't always obvious). The article also showed a USA map of where CWD is being detected. I've been looking for a CJD infection map to compare and see if there is any future correlation. www.msn.com/en-us/health/health-news/zombie-deer-disease-will-be-virtually-impossible-to-get-rid-of-if-not-kept-in-check-experts-warn/ar-BBWbxtR?ocid=spartanntp

[@dzfaz]

Blood transfusions I thought were not found to be transmissible for prions.

[@SpiDey1500]

@@dzfaz There are some known cases. So yeah, blood transfusion is a possibility, but a very unlikely

[@1houndgal]

@@dzfaz not true. Some blood products have a risk transmitting prions.

[@MountatinMusic0]

my uncle A Musician of 48 year has just been diagnosed with this... he is in the hospital right now. such a horrible disease

[@barbaraestrada7506]

My mother is suffering from a strange diseases. The neurologist just told me about this diseases. & my mom has a high risk of having this. I'm so broken. It's been very hard for our family. She started @ age of 40 & has been suffering for almost 4 yrs 😢 I'm true sorry for your loss.

[@reeshabhmittal986]

Barbara Estrada so sorry for your loss and my father also on bed with this disease

[@СветланаТрофимова-у2щ]

Слишком долго для прионого заболевания, 4 года, расскажите пожалуйста, симптомы вашей мамы?

[@caroliinebinns7304]

My sister died undiagnosed in 1980 aged 16 years old 2 days before her 17th birthday. It’s heartbreaking there was no diagnosis. My clever, funny older sister. Dying so young with a form of neurological disease. Looks like CJD. My heart goes out to all the families in this documentary and beyond who have experienced this in their families.💙

[@Mylife-yd9xq]

So sorry for your loss how did she contract this horrible disease.

[@caroliinebinns7304]

Hello thank you for your condolences. It was never diagnosed even after numerous tests . It does appear very much like CjD though. More retrospective research needs to be done.💙

[@Mylife-yd9xq]

@@caroliinebinns7304 thank you for replying so do you think to much stress can cause cdj?

[@caroliinebinns7304]

@Guala Bills. Possibly stress may have been a contributing factor. However my sister was only 15 it was noticed something was not right with her. The brain is so complex. What ever triggered it is uncertain, but the she presentation and rapid demise points all points to this awful disease!

[@colinhollenbeck5682]

@@caroliinebinns7304 What were her symptoms? Had anyone died of something similar in your family? And prolonged stress is proved to cause neroulogical problems and also hinder the immune systems responses to infections.

[@gd2234_]

I’d love to hear your opinion on CWD. Researchers on the west coast have shown that human-mouse models CAN be infected with CWD. There is also a spike in CJD in rural, southern Michigan that I’m convinced is caused by CWD. Very sad that I may never get to try venison, but I’m not gonna risk it until more research is done on it

[@HolcombvilleEntertainment]

My opinion is... right now there is no proven science that CWD is transmissible to humans. But prion diseases can take decades to incubate in humans so if CWD mutates into a form that can - it won't show up right away in the population. I certainly wouldn't risk eating untested/unregulated meat from anywhere.

[@lucianaromulus1408]

​@@HolcombvilleEntertainmenti mean BSE transferred to humans...why cant CWD

[@vulpesaustralis1452]

​@@lucianaromulus1408 While certainly possible, the degree of transmissibility of one does not necessarily suggest the likelihood of the transmissibility of the other. We of course learned this the hard way when assuming that the lack of species jumping in scrapie would be shared by BSE. Similar could be the case for CWD, but equally the opposite could be true. In fact, while not conclusive, there is evidence which suggests that the compatibility of the CWD prion with the normal human PrP protein is low (while in the case of BSE it was high), which with other evidence further supports the idea that the chance of human infection is remote. Still, it's important to remain vigilant, we know what happened last time.

[@marymoon96]

Thank you for this, and I'm sorry to see you have the markers, too. My mother in law has just been diagnosed and I guess we won't know unless there is an autopsy if her children (my husband and siblings) will inherit this mutation? I guess I'm confused on the genetics. If the mother in this story had not gotten it from her father - had she gotten the sporadic version, does that mean she had those markers earlier in life and could have passed them on to her children and then not developed the disease until her 70's? If she had sporadic, does that mean her kids won't have inherited it?

[@andresaenima9938]

good questions! i would like to know that too

[@muhsinakp4949]

My father is suffering from this fatal disease.. it's been 8 months... 😓 It's getting worst day by day...

[@Janet_scribbles]

So sorry

[@israelakisin5201]

I can recommend a powerful man who can help you with herbs and healing spell like he also help me

[@inukprasad2692]

Sorry for your situation. How is he doing ?

[@amber_Forever16]

israel akisin seriously??? I guarantee you didn’t have a prion disease that got cured from herbs!!! That’s literally impossible!

[@israelakisin5201]

@@amber_Forever16 what thy f***k are you saying

[@chipmunkaraoke]

OMG better than any movie.

[@chipmunkaraoke]

gets goose bump at the end!

[@dinkdankdoo3035]

Film.

[@teariet.tekken-wolffenn5881]

definitely.

[@brigettegeniusz6825]

I lost my aunt today from it. She died roughly 8 weeks after being diagnosed

[@sidstovell2177]

So fast. I have to say - I watched my neighbor go through hell for 15 years after her brilliant professor husband was diagnosed with Parkinson's. I don't know but I would prefer faster than the endless misery faced by families dealing for years with dementia or other neurological diseases. And never mentioned, the incredible financial drain.

[@pamp.phongsay2976]

So sorry for your loss. My father- in- law had dementia by the time he died on 2017. Hope we all can find a cure for our love who's suffering from it and future generations to rid from it.

[@oo-mq4us]

This is the worst of the worst.....my brother in law was diagnosed with the illnes 13/12/2023....he was still walking and eating and basicly doing everything else.....we are now almost 4 weeks in.....he is in high care with feeding tubes and oxygen. 😢

[@shellbacksclub]

I'm so sorry.🙏🏻

[@andresaenima9938]

same here with my mother in law

[@SkeebosRibShack]

ANY UPDATES? HOW IS HE?

[@txmichaels]

My mother was afflicted with this disease which killed her in 1989 at the age of 64. I know what you went through.

[@jujurenni414]

My husband had a genetic test in 2009 after his mother passed from CJD and has the CJD T183A-129M. They basically told him he was screwed. His mother, grandmother and two uncles all died from the same thing. He's positive it starts in late 40s and can go on for a few years before death. Is there anything new with research? What do I do with this knowledge, just prepare for the inevitable?

[@architsharma6524]

Juju Killmer listen to medicine Buddha

[@sadpepe7937]

I'm so sorry to read about this. Since this absolutely horrific illness is incurable still, if you can, move to a state or country that grants the right to die (euthanasia). Nobody should die such a horrible death.

[@Linward]

I was told to get a long term health insurance policy before getting the genetic test to see if I have the marker, and that I'd not be insurable afterwards. I've ultimately decided to not have the test. I just don't want to even know if or that it's going to happen. And honestly, if I knew for certain that the onset had begun, I know what choice I'd have to make for myself.

[@posojonne6602]

Nope he is gonna die expet there is one drug i dont remember its name but it has shown to rapidly stop the disease but it has shown that long term expousure to the drug is gonna cause extreme kidney and liver damage and so the patient is gonna die anyway

[@Dookie69uk]

@@posojonne6602 Your thinking of pentosan polysulphate., which is toxic to the liver and only buys a modest extension to life and symptoms, often it doesn't even do that.

[@Frankonero12]

12:16 He doesn't blink his eyes once.

[@amberblyledge7859]

FrankoNero Holy crap, you are right!

[@Verseaurainbows]

Wtf is wrong with that guy!? Who can go so long without blinking!?

[@ynespapac4069]

We are seeing this with my grandfather? he has been diagnosed as probable CJD. He is currently experiencing these episodes where he cannot open his eyes......

[@stormgirl09]

is it just me or do i keep hearing the tune of Nine Inch Nails-Hurt in the background? i guess considering some of the lyrics in the song it can be kind of fitting to the topic the video is about. suddenly now the song seems so much more darker than it already was....

[@HolcombvilleEntertainment]

Its not actually "Hurt" but a song that sounds very similar

[@WeatherMoon]

Thank you

[@babydii3487]

My hands and feet are sweating 😢

[@taeowynne]

Oh and cumulative brain trauma injury acts this way too. I have that. Balance issues, panic, aphasia and usually for me it's worse when I'm conversing or stressed Forget doing long tests or numbers backwards. Didn't know I even had it until a test was ordered through disability with my other symptoms. I have good and bad days. Interesting the similarities because I have neuropathy and such from out of nowhere but I've had it over 8 yrs so I'm pretty sure not cjd but it's a combination of things from my 20s on. I'm adopted since zero records of family illnesses

[@jessealt5415]

Really great video; interesting and informative as well as heartbreaking. Sorry about your grandfather, mom and E200k positive result.

[@pragmatic7green]

Poor sweet people & their families 😶😢💔😥💔💔💔😥😥😥😥😥😥😶😢💔😥😶😶😢😢😢💔💔💔😥😥😥😥😥😶😶😶😶😢💔💔💔💔😥😥😥😥💔💔💔😢😶😶😶😶😢💔😥😥😥😥😥😥😥💔💔💔💔😶😶😢💔💔💔💔😥😥😥😥😥😥😥😶😶😶😢💔😥😶😢💔😥😢😢😥😥😥😥😥💔💔💔😶😶😶

[@janemcconnell1132]

I recently lost my husband of 51 years to this horrible disease. It was heartbreaking to watch some you love with all your heart just waste away and you can do nothing! I feel for all of the families who have been affected by this dreadful disease

[@nicsky20]

My.mother died.from this disease 13yrs ago. The picture of the mother in hospital was like my mother. She was driving a car and 60days later she was gone. Awful and very scarey

[@andresaenima9938]

i wonder if it is any group that we could all in here that has been afected directly or indirectly with this desease join to be in touch for any news about any posible treatment???

[@andresaenima9938]

or we could just create one

[@hollydaugherty2620]

There are support groups. There is also the CJD Foundation in the US. If there was a breakthrough in treatment (there isn't) you would hear of it on the news and definitely read about it there.

[@robynturei5592]

😭😭😭 My brother went to work one day and was having a normal day when his brother in law saw him in the yard just standing there confused. He's a truck driver. This has just started and we are waiting for his results to come back but the hospital is sending him home as a day patient. He remembers when we were kids and he remembers his wife at the age of 15 but he doesn't remember his kids or grandchildren. My brother just had his 60th birthday and we don't have big hospitals in our small country with bulk money, We are from New Zealand. We need help.

[@HolcombvilleEntertainment]

Australia has a solid CJD support group. You can find them via Facebook.

[@СветланаТрофимова-у2щ]

Как ваш брат?

[@carolmoss6309]

thank you!