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By Eryca on January 11, 2015 - 11:48pm
Working on a daily journal here with symptoms while caring for my mother. Hoping this might help people in the future. I know i constantly wonder, "how much longer will this go on? what point is she at now? what should i expect next?" I hope to submit it after she passes, for all to read.
When i look back, her 1st symptom was 2/14, she had dizziness and a fall. in May of 2014, she started having weakness in her legs and started to require a cane. These symptoms were dismissed by her neurologist and blamed on her "myesthenia gravis" (which i think she honestly never had) and her spinal stenosis. Things started going downhill Oct 30th when she was admitted to the hospital for severe confusion. Her CSF came back with probable CJD on Nov 20th. I currently have her home in hospice care. She is to the point of being almost bedbound. I am thankful i can be here to help and just found out I am positive for the mutation the other day.
Once my mother passes and i get back home to Idaho and settle, i plan to contact UCSF to see what i can do about this.
my mother is 65.
We are 99,9% positive her sister passed due to CJD 3 yrs ago, but her symptoms were dismissed as anoxic encephalopathy due to her COPD. she displayed many symptoms though.
My grandmother died at age 42, back in 1965 of "Alzheimer's disease". She died approximately 1yr after sympom onset.
Is anyone else hooked up with UCSF for research? If so, what are they doing?
By Arturo on January 11, 2015 - 12:35am
I apologize by "gant" a ment gate (balance issues. The reason I said we saw symptoms spanning ten years back, s is simply what my mom recounted when the disease became more and more prevalent. My dad's diagnosis was official upon autopsy. I hope my clarifications find you well...
By Donna on January 10, 2015 - 1:41pm
Lost 2 friends to CJD:
Josh is right, read all the research with CJD, it doesn't last more than a few years from beginning of symptoms. If it does, it ain't CJD, it's Alzheimers or other dementia.
But I guess you could call a rapidly progressive Alzheimer CJD too, there's a lot of overlap with dementias, you know
By George on January 10, 2015 - 1:40pm
Patti Smith: sorry to hear that, it must be devastating at that age. 23 is so young. Was it variant CJD (vCJD) she had? Did she live in the UK?
By Anna-mare Fallows on January 10, 2015 - 10:07am
Thanks for the reply, I would like to communicate via e-mail. I don't think I am allowed to post my e-mail address. I will request your address from Lori and would appreciate if you would also please contact Lori for mine. All the best with your family member, you are in my prayers.
By Patti Smith on January 9, 2015 - 10:00pm
I came upon this page doing research for a neurological disease my niece has. My beautiful, baby sister had CJD & died at the young age of 23, in 1981, but it seems like yesterday. I Pray there has been more research, ways to help families while their loves ones are still here & after they leave us. I would be more than pleased to speak to anyone, if they are interested, via email. God Bless CJD patients & families.
By Lost 2 friends to CJD on January 9, 2015 - 8:58pm
Have you lost anyone to CJD or are you dealing with the diagnosis of a friend or family member? This site is for positive and uplifting encouragement to those whose lives are devastated by the loss of people with this illness. Science knows very little about the disease, especially the sporadic type. The people on this site share their experiences and don't claim to be scientists or doctors. Arturo is a long-time encourager to people on this site, and he is appreciated by many hurting people. If you have questions about the disease, please ask them; please don't belittle others or be condescending...as in "do you see where I'm going with this?"
I lost 2 friends to CJD, both of whom worked with me, and both passed within 2 years of each other. I have read your many posts over several years now and appreciate your story. I look back over the years to try to figure out what symptoms were occurring with my friends, and how we could have known what was coming. No one knows how long the symptoms start, and any shared insights are truly helpful to those of us who struggle with not knowing any more than research scientists and doctors know.
Thanks for your transparency and faithful encouragement.
By esra on January 9, 2015 - 8:05pm
Annem şuan hastanede.artık nefesi tıkanmaya başladı.ben en çok kış ayını severim.dışarıda kar yağıyor.ancak ben hiç bakmıyorum.zor çok zor.rabbimin bir planı vardır elbette.ben ingilizce bilmiyorum.bu yüzden kusura bakmayın.3 ayı geçtik.annem hala nefes alıyor.buna da şükür.ablam da kalıyorum.eve gidemiyorum.sadece dua edebiliriz.başka şansımız yok.bazen kabullenmek gerekir.elinizden birşey gelmiyor.kabullenip,dua etmek gerekiyor.BEN ANNEMİ ÇOK SEVİYORUM.VEDALAŞMAYA HAZIR DEĞİLİM.ALLAH IM DAN TEK DİLEYİM BİRAZ DAHA SÜRE VERMESİ.ALLAHA EMANET OLUN.
By Phoebe Rello on January 9, 2015 - 7:33pm
It saddens.me how many people have passed away from CJD since my mom passed away in March of 2013. My thought and prayers are with the families who are suffering from this horrible disease and who have passed away.
By Josh on January 9, 2015 - 7:09pm
You say that:
"My dad's symptoms spand back 10 years prior to diagnosis involved his gant and dementia. My mom told me he had balance issues, but many doctors passed those symptoms as having both weak ankles and needs. My dad was a city manager who had to go to every city council meeting. He needed to negotiate a contract for the city one meeting. During one of these meeting (in the blink of an eye) my dad forgot who he was and where he was. As a result he lost a contract"
What's "gant" and "gant issues"?
Those symptoms your dad had 10 years prior to his death were not CJD. If your dad forgot who he was and were he was, but then remembered again, and the symptoms subsided for several years, that's not CJD. CJD gets progressively worse, it doesn't get better (especially for several years) then worse again.
He may have had CJD which started in 2000, but that is something different than what happened in 1992.
Did your dad have CJD diagnosed by brain biopsy-autopsy analysis after his death?
By Arturo on January 9, 2015 - 6:50pm
Yes I do understand. to followup on my previous post, and give you some chronological timeline here you go:
In 1992 my dad got a job as City Manager of Delano, CA. (at 38 years of age) This was when he had the gant issues
symptoms sudley subsisted until 1998 where he was hired as City Manager of Colfax, CA The gant issues came about once again, but the VA hospital in Sacramento, CA told him was because weak knees and ankles.
In 2000 (at age 46) the dementia started showing it signes. I asked my dad for a glass of water. Thinking that I have dropped that full glass of water, my dad slapped me in my face. A couple days later, he asked my sister to call the local theater and get the movie times for a particular movie. The theater did not pick up after the first couple rings, so my sister decided to hang up. My dad became upset because she did not stay on the phone long enough. Around this time, my dad also became obsessive with his hygiene (carrying multiple bottles of hand sanitizer in his car and taking showers more than once a day)
In 2001 my dad became City Manager of Corcoran, Ca. One he had an uncontrollable fever( one of the many symptoms of this disease), my dad rarely got sick, and had miss his first days if work in this new position. During this time he was diagnosed with Sleep Apnea. During one of the city council meetings In the blink of an eye he forgot who and where he was. One of the issues on the city's agenda was to acquire the city a contract (my dad was pretty well versed in these negotiations), but because of his absent mindedness at this particular meeting. The city lost the opportunity to acquire this contract. A couple weeks later he willfully resigned.
In December of that year we moved to Oxnard, CA where the majority of my parent's families live. We also that it would be a could place to be so he "get back on his feet". Little did we know the dominate symptoms came out like a freight train. Because he was diagnosed with Sleep Apnea, they gave him a machine. He had forgotten how to take the machine off in the mornings. Around this time he also napped a lot during the day. I have Quadriplegic Cerebral Palsy, so I needed my mom's help in getting out and dressed for the day. One Morning my mom woke up to help me. About five minutes later my dad woke up was looking for his brother that claimed he saw last night in the house a day earlier. The uncle my dad was looking for has been dead for 30 years. Not paying much attention to this incident, we went on with the day. About five days later, he had a job interview. From to the point of my dad walking out the door to some point while on the freeway. He had forgotten where he was going. Luckily he knew his way back home. At this point, he and we we started to suspect something was wrong. His general physician asked him to go his office immediately. They ran some minor test (at which I do not know, I was 12 at that time). As my dad got back into his car to leave he forgot how to drive. Luckily he remembered he had a cellphone and call my uncle. My uncle parked his car at my dads doctor's office to get my dad as soon as he could. This day was the first day of both me and my sister's day of summer vacation (June 2001). As soon as my dad got home with my uncle My mom and dad immediately went to the Los Angeles VA hospital.
My mom came home close to midnight that night, and I had decided to sleep in our livingroom that night. I asked my mom if my dad came back with her she said no and that they admitted for testing (again, I did not know what these test were). That following Saturday, we went to see my dad in the hospital. He had a private room, but it was on a floor where all the room isolated in a way. After many EEG's CAT Scans and MRI's ruling out every other disease (such as ALS early onset dementia and vascular dementia|). Working in collaboration with UCLA, the VA neurologist came down with the probable diagnosis of CJD. The symptoms became more dominate further. FLAIR test were ran along with a 14-3-3 test to confirm a 90% diagnosis of CJD. When my parents sat down with the neurologist, they gave them the many possibilities of the more progressive symptoms of the disease. The neurologist asked my dad if he would be willing to donate a his brain after passing, to further research. My dad and mom bot came to came a consensus of making the donation. While discussing the forthcoming symptoms, the neurologist mentioned hospice as an option. Having my sister and I still in grade school at the time, my dad decided that he would rather spend the remainder of his time with us. His neurologist prescribed him to help him alleviate symptoms of the disease, and mom brought him home that night. There were nights when he forgot who we were. He remembered me and my sister were kids, but that my mom was just the woman he shared a bed with. In August of 2001 My dad's brothers and sisters came up from Texas to say goodbye, as well as my half sister from Salinas, CA. My dad had the (presumably) worst birthday's of his life, at 48. His gant issues became to hard for my mom to physically bare and had to readmit him to the LA VA. That forthcoming Sunday was the last day I saw my dad alive. Me snd mom saw him sitting outside of his hospital room facing the nurses station, eating his lunch. They placed him there to monitor him and making sue he did not try to stand up. When he was done eating his lunch me and my took him up with to the hospital's chapel for Sunday service. Every time I saw my dad I couldn't help but cry. When he did leave services we took him to family room . My mom needed to back to his room shortly after taking us to the family room. My dad wanted to go and look for my mom. I told him I would go look instead. Once I got to his room I saw restraints along the rails of his bed, that's when it started this realization started to sink in. For the 4.5 months I convinced myself my dad was acting. When I get back to the family room with my mom we said our tearful goodbyes. That Tuesday he was transferred to a convalescent hospital. That Friday (october 18, 2002) evening my dad passed away peacefully in his sleep...
By Arturo on January 9, 2015 - 4:27pm
My dad's symptoms spand back 10 years prior to diagnosis involved his gant and dementia. My mom told me he had balance issues, but many doctors passed those symptoms as having both weak ankles and needs. My dad was a city manager who had to go to every city council meeting. He needed to negotiate a contract for the city one meeting. During one of these meeting (in the blink of an eye) my dad forgot who he was and where he was. As a result he lost a contract. Fortunately a city council saw my mom in the following days and accounted this event. My dad also had a job interview as he walked out the house, he knew where he was going, but as he was about to drive into the freeway he forgot where he was going. Luckily he knew his way back home. He also napped alot more than once during the day. What really tipped us off in knowing something was wrong, he had a docto]rs appointment. After the apointment he could not the way out of the parking lot. Fortunately he knew how to use his cellphone to call one of my uncles. That eveng my mom took my dad down to the Los Angles VA hospital
By DC on January 9, 2015 - 11:15am
Anna-mare Fallows: I know how you feel. I have a family member going through the same thing. Can you post your email here, I will contact you then
By Josh on January 9, 2015 - 4:51am
Arturo: What do you mean "We easily saw symptoms about 10 years before his diagnosis"? Describe the symptoms please, which had 10 years before his diagnosis.
If you dad had any symptoms 10 years before his death they were either not due to the disease, or he didn't have CJD. If a dementia is longer than 2 years, it's not CJD. Few exceptional cases may last 2-3 years.
Then every issue your dad ever had (childhood memory issues, dizziness during his teens, etc) could be CJD. Arturo, if you ever have a moment of confusion, then die in 30 years from now, people will say "oh, 30 years ago, we saw the early signs of CJD". When in fact, it was something else. Do you understand where I'm going with this?
By Arturo on January 6, 2015 - 3:43pm
I am sorry to read of your mom's diagnosis. My dad passed from Sporadic CJD 12 years ago. He courageously fought this disease for 4.5 months. He passed one month after his 48th birthday. If you would like to talk on a one-to-one basis, please feel free to email Lori (atop of this page). Take care, God bless...
By esra on January 6, 2015 - 5:16am
ben türkiye den esra.
Benim annem 57 yaşında 2 ay önce cjd tanısı kondu.herşey bir kabus.annemin rahatsızlığı gözle başladı.şekiller kayıyordu.annem çok zeki bir kadın.böyle bir hastalıktan olması çok üzücü.ben bunları nasıl aşabileceğimi bilmiyorum.bizim ülkemizde doktorlar bu hastalığı nerdeyse hiç görmemişler.protein 14-3-3 testi bile ABD de yapıldı.bizimkisi cjd nin en kötü olan türüymüş(heidenhain).bizimkisi hızlı ilerledi ancak 1 aydır annem aynı durumda.iskoçyada bir araştırmadan bahsettiniz.lütfen ayrıntısını bana yazarmısınız.çok zor.
Ağlamak yetmiyor.inancım olmasa delirirdim.annem benim hayatım.çok değerli.herkesi çok iyi anlıyorum.Allah yardımcınız olsun
By Anna-mare Fallows on January 5, 2015 - 6:55am
Thanks for the reply and so sorry about your wife.
Her case is the most similar to my mom's that I have read. She also started with minor balance issues, the distorted vision and one or two hallucination. And the ear infection that started it. She was admitted 10 Oct and spinal tap performed the next day. The day after she was in a coma. She has been in the same condition since the and up to today her situation has not improved or deteriorated. How can the CJD be in fast forward and then all of a sudden move to slow pace? Have you ever considered that the spinal tap accelerated the speed of your wife's deterioration? I can accept the fact that my mom has CJD but I find it difficult to understand that she could deteriorate so much in just one day and then everything stands still... After reading up on spinal taps I have realised that a brain injury called coning of the brain can occur with these exact symptoms. This makes it so difficult to know in which stage of CJD my mom is. Maybe she is in the very early stage where all of the other loved ones were still able to communicate and now she is just trapped and is still fully aware of every frightening part of what is happening to her.
I am so sorry to ask but what was the cause of your wife's passing? The reason for my question is that it seems to me ( I know I am new at this...) that that CJD itself does not cause but rather secondary infections. Can CJD only affect a certain part of the brain and then stop or will it continue until the whole brain is destroyed? Also the most basic part that controls breathing and the like. Can CJD then kill someone without the person falling ill from something else?
My mom was discharged from hospital and we received a positive result for sCJD from Scotland. I see there are different sub types and that they determine the duration of the disease. Would the 14-33 test that was done on my mom tell us the sub type. I also read about a RTQurC test. Is this also done on spinal fluid and for what? What test can the family do to see if we have the gene?
My mom is physically very healthy. we feed her via a PEG tube 6 x times daily and as soon as we detect any infections we give antibiotics. We immediately suction flem before it causes problems. We monitor her saturation levels and give oxygen as soon as it drops. It feels like if we keep going we can hold on to her...If she does not get any infections will the CJD on its own still be able to take her?
Having my mom here is a double edged sword. It is a blessing spending every possible moment with her. On the other side we are terrified of the last days and what it may bring. What can we expect and how do we deal with this.
Lastly I don't see that much said about the hallucinations. This is the worst part for me. Even though my mom is in a coma she still opens her eyes and looks around. I don't know if she sees us. The distressing bit is the absolute fear that comes over her when she "sees" something. How can it be possible that the disease can take everything from my mom her dignity, sanity but leave her with the mental ability to still hallucinate. This is cruel and horrible. How does one deal with this??
I would like to contact you and will ask Lori for your details. Please do the same if you wish.
By Chris on January 4, 2015 - 2:49pm
Sorry to hear about your mom. Although we hear a lot about people lasting quite some time in this and other CJD forums, that’s not always the case. Consider my wife’s case:
My wife had some very minor balance issues on June 14, then was fine until June 17 when she had some memory issues in the evening and a hallucination. On June 18th, we went to the emergency room and they could not find anything wrong with her. The next two days she was fine. Then, at 4pm on the 20th, we went to the hospital for a spinal tap, but for unrelated reasons, the tap could not be done until the following afternoon (June 21). She stayed in the hospital because she failed the finger-to-nose test. Within a couple of days after the spinal tap, she was in a coma, although it was a light one, so she woke up from time to time, but she never walked again. And from day five until the end on July 16, 2014, the number of words she spoke in total could be counted on two hands. All in all, she was in the hospital 20 days and the hospice 6 days...a total of 26 days.
With the exception of the hallucination on the evening of June 17, all the other symptoms were so inconsequential that we chalked them up to “senior moments” or possibly a UTI (sometimes seniors with non-symtomatic UTIs can present symptoms of dementia). She also had some thrashing about in bed in the middle of the night that had started some weeks before her June 14 balance problems, and we now know that the thrashing was CJD; at the time, she thought it had something to do with a UTI. Likewise, she had a mysterious “cold” back in March and April that lasted for 6 weeks and only had one symptom, that of occasional bouts of violent sneezing (about 1 per day), and we now know that this was probably another CJD symptom.
(Lori has my address)
By Anna-mare Fallowsa on January 4, 2015 - 4:27am
Thanks for replying to my post Arturo. I have contacted Lori for your details and anyone else is welcome to contact Lori for my e-mail address. I welcome any information at this stage.
By Arturo on January 3, 2015 - 10:35pm
I'm sorry to read of your mom's diagnosis and current state. Unfortunately (It's truly heartbreaking to say and bear in mind) that each case of CJD is different, from our loved one's symptoms (both before and after) diagnosis. To the duration of this monstrous disease. My dad passed from Sporadic CJD 12 years ago. He courageously fought this disease for 4.5 months. He passed one month after his 48th birthday. If you would like to talk on a one-to-one basis, please feel free to email Lori (atop of this page). Take care, God bless...
By Anna-mare Fallows on January 3, 2015 - 6:35am
Hi, I have spent much of today reading your stories (crying a lot!). My mom's story is the same but with one major difference that has been bugging us all along. I see that most people started having symptoms and then with time became bedridden. My mother first presented with balance issues which we thought was caused by an ear infection or vertigo. After this she experienced distorted or broken vision. An aneurism was found behind her left eye and we ended up at a neurologist. He diagnosed her with status epilepsy and she was hospitalised and a spinal tap was done. Within hours after the spinal tap my mother who was walking, talking, eating and basically being a normal human being with a visual impairment was in a comatose state. Right after the spinal tap she started throwing up and within hours she could not swallow, talk, or move. It feels like my mom went from first stage with barely any symptoms to final stage of sCJD within hours. Is this the normal progression? It certainly does not seem to be the case if I look at your stories. We are so scared that something went wrong during the spinal tap and that no one wants to own up. We got no explanation as to why my mom went from being diagnosed with epilepsy to being comatose. We tried to rationalise and thought she was in this state because of the high initial doses of medication. Later we were told she is not sedated but this is the way she is. My mother was in hospital form 10 October 2014 and stayed there for a month. The neurologist told us he suspected CJD. We were devastated. A month later our medical aid was used up and they advised us to take her home to Botswana and keep her comfortable, saying she only had weeks to live. This meant that we had to take someone home who had to be fed and medicated via a PEG tube. She cannot move, swallow or talk, uses nappies and a catheter. It was a tall order for the doctors to say, keep her comfortable it will be easy...It is now 3 month later and my mom has not improved but not deteriorated. It is so difficult knowing in which stage she is. If damage was done due to the spinal tap she could still be in the early stages(being completely aware of everything!) and not final stage as the doctor wanted us to believe. it is heart breaking to see my strong, confident, loving, caring mother being reduced to someone who has to be turned, cleaned and fed through a tube. This is a terrible disease and I cannot believe someone has to die like this. Statistically spoken she should be the only person in the whole Botswana with this horrible disease. She looks at us, but does not blink or do anything to indicate that she can understand. She often stares at something and then has a terrified expression. She has jerking but very minimal. How do I know if she is still fully able to think and just has no way of letting us know? I love my mom with all my heart and wish I could help her.
Thank you so much for sharing your stories and letting me share mine.
By Arturo on January 2, 2015 - 3:58pm
I'm sorry to read of your sister's passing. As you know, this monster of a disease. can masquired itself in many different ways. As well as, coming out for briefly years to months before actual diagnosis. My dad passed away 12 years ago from sCJD. He courageously battled this monster for 4.5 months, passing one month after his 48th birthday. We easily saw symptoms about 10 years before his diagnosis in June of 2002. He and my mom chose to have him spend with his last days with us at home, as both me and my sister were still in grade school at that time. About 4 weeks before my dad's passing, my mom was no longer able to care for him. She had to readmit him into the hospital. That following week he was transferred to a skilled nursing facility and passed away two days later.
You and your family are now apart of a family spanning the world over. Do not be hesitant to post back here. If you would like to keep in touch on a one-to-one basis. Please feel free to email Lori (at the address atop this page). She will be more than willing to relinquish my contact information. Take care, God bless...
By shirley kacian on January 2, 2015 - 10:15am
My sister passed away on December 20th from CJD. She was diagnosed in October 2014 after a spinal tap was sent to the foundation. It was verified via post mortem brain biopsy. In 2009 she started having dizzy spells, sometimes fainting. She progressively had numbness in her legs. She was hospitalized at the Rehab Institute of Chicago where she had PT, and diagnosed with CIPD. She was fitted with a motorized wheelchair, and for the last year she had been confined to her bed. She was under the treatment of a psychiatrist and a doctor for pain management. On the rare occasion she went to a doctor appt. she was transported in a medical car or by paramedics. She was suicidal. In October she was in and out of the hospital. She came under the care of a Palliative Specialist who diagnosed her with possible CJD, and proceeded with tests. My sister was transferred to a nursing home, where she passed away.
By Arturo on January 1, 2015 - 7:21pm
Happy New Year Family!!! May this year bring peace, prosperity, and new opportunities.
By Arturo on December 30, 2014 - 3:52pm
I'm sorry to read of your mom's death. We are glad though that you found this website. My dad died from sCJD 12 years ago. My dad courageously fought this monstrous disease for 4.5 months. Subcoming to the disease a month after 48th birthday. I too was young, at 12. If you, or anyone in your family, have any questions please feel free. to post them here. Take care, God bless...
By Debby on December 29, 2014 - 11:31pm
Our mom died from (natural caused) CJD in the early 1970's a year after our father died in a tragedy. Mom was misdiagnosed and institutionalized, then after a few long months sent to a hospital in a coma where she was diagnosed via biopsy. Finding this website (recently) brings out a complex array of emotions and memories but it is also heartwarming to find such support, as back then there was no support outside of our small group of friends and family. I and my siblings were barely out of high school when everything familiar disappeared. Nice to know you are there.
By Arturo on December 27, 2014 - 6:25pm
I am sorry to read of your son's passing. There has been reports of families having more than one loved one pass from CJD without the familial genetic makeup. From what I know a blood test can tell you if you have the mutated Prion gene. My dad passed from sCJD 12 years ago. he battled this monstrous disease for 4.5 months. Passing one month after his 48th birthday. If you would like to stated on a one-to-one contact, please feel free to request Lori for my email address. Take care, God bless...
By Diane on December 27, 2014 - 4:30pm
My son passed from fCJD last month. He was 45 years old. His symptoms started in about January. He may have had some memory issues before that. He was diagnosed in June. We were told he had about 6 months to two years to live. He died in 5 months.
My Dad also died from CJD in 1983. I was told at that time that his disease could be hereditary, but his autopsy only confirmed that it was CJD. They didn't do any genetic testing at the time. I didn't give the hereditary part of the disease much thought after my Dad's death. However, I now know that I am carrying this disease.
What I'd like to know is if there are other people out there who know that they are carrying this disease and how they are dealing with that knowledge. At the moment I'm grieving my son and wondering how long I have.
Lori has my email.