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The Creutzfeldt-Jakob Disease Foundation, Inc. is a non-profit patient/family support organization.
This Guestbook is solely for the use of families and friends affected by CJD to post their thoughts and personal stories. We reserve the right to remove postings that can be interpreted as medical advice, advertisements, disrespectful, solicitations, requests for donations for fundraising events, or offers of financial aid. Management of this guestbook is at the sole discretion of the CJD Foundation. By posting an entry you are agreeing to these terms. When signing the guestbook email addresses are hidden and only available to the website administrator.
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By Lisa on May 20, 2015 - 11:29pm
Hi Kathy. I'm not sure if this helps as far as clustering in Westchester NY, but my mother passed away Feb 5 2015 in Suffolk county, Long Island. I'm sorry for the loss of your sister. My family and I are still without words on the loss of my mother who was only 60 years old.
By Arturo on May 20, 2015 - 3:17pm
I'm sorry to read of your sister's passing. This monstrous disease, once thought to have a 1/100,000,00 statistic is most unfortunately miscalculated. My dad passed from sCJD 13 years ago. He courageously fought this monster for 4.5 months. Passing one month after his 48th birthday. Both the National Institute of health (NIH) and National Prion Disease and Surveillance Center (NPDSC) closely monitors "clusters" of CJD cases. Back in 2011, there was a cluster in Sonoma County, California. That cluster was the first I heard of since my dad's passing in 2002.
If you or anyone in your family have a FaceBook account. The "FB" badge, directly below this page, will take you to the CJD Foundation's FaceBook page. They are also on Linkedin and Twitter. In FaceBook, their is also a few of CJD and Prion disease support groups/message boards. Such as "CJD Family", "The (International) CJD Support Network" and " Creutzfeldt-Jakob Disease Awareness". If you would like to keep in touch with a family on a one-to-one basis. Feel free to email Lori (above this page), she will be more than willing to relinguish my contact information. Take care, God bless...
By Kathy on May 20, 2015 - 10:34am
I have lost my sister from CJD on March 14th. She lives in Westchester, New York. Since her passing two other woman in her area have passed away from CJD. If it is suppose to be so rare how does 3 people in 2 months pass away from this disease. These are only incidences that I am aware of. If anyone else knows of people passing away in Westchester, NY recently please let us know. Sorry to all of you on this page that had to endure the pain of watching there loved one die from this horrific disease
By Craig Nimmo on May 20, 2015 - 9:48am
I was looking for some useful information and thought I might find it here. A total waste of time :(
By Chris on May 16, 2015 - 3:51pm
Sorry to hear about your sister.
I suspect you've already had an answer to your question, but just in case, here goes: If your sister has definitely been diagnosed with fCJD (familial CJD) by way of a brain autopsy or through DNA testing, you might want to consider getting the DNA test, too. I've heard that sometimes these are free, and sometimes they are not. In either case, it's highly recommended to talk to a genetic counselor before getting the test. The UCSF Memory and Aging Center has a video on YouTube called "Genetics and Family Studies" that you may want to watch, and I did once see a video on YouTube about why it's important to have genetic counseling before making the decision to have the test, but I can't find it right now. Personally, I wouldn't rush into the test without taking to someone about it.
Hope this helps,
(Lori has my email address)
By Arturo on May 1, 2015 - 2:28pm
I'm sorry you are experiencing the invasion of CJD in your family. This monsterous disease not only takes our loved one's. And a part of us, but it also takes our rationality and faith we have in modern medicine. My dad passed away from Sporadic CJD 13 years ago. My dad went through a battery of test, before doctors gave him and my mom the 80% prabable diagnosis of CJD. At that time my dad was lucid enough to participate in UCSF drug trails, and allowed his brain to be donated after his passing. Being still in grade school, both me and my sister, my mom could not find the time to travel with my dad to UCSF. In collaboration with UCLA the vA medical cent just sent my dad's fluids up to UCSF. My dad fought this disease courageously for 4.5months. Spending the majority of his time with us at home. Passing one month after his 48th birthday.
If you have FaceBook account, the blue "FB" badge at the bottom of this page, will take you to the Foundations, FaceBook page. Also in FaceBoook, their are numerous CJD and Prion disease support groups ("CJD Family", the [international] "CJD Support Network", and "Creutzfeldt-Jakob Disease Awareness"). If you or anyone in your family would like to stay in touch on a one-to-one basis. Feel free to email Lori and she will be more than willing to relinquish my contact information. Take care, God bless...
By Shannon Cripps on April 29, 2015 - 11:45pm
Reviewing the foundation, mother diagnosed with rapid sporadic CJD...walking and normal to coma in 7 weeks. Removing her from respirator tomorrow......
By Arturo on April 27, 2015 - 2:38pm
I'm sorry to read of your dad's passing. My dad passed from sCJD 13 years ago. He courageously fought this disease for 4.5 months. Passing 1 month after his 48th birthday. No one's journey down the CJD road is easy. Especially for me and my family. 1 year after my dad's passing my mom was diagnosed with and an aggressive form of breast cancer. Going through CJD I that my mom was dying as well. I was 14 when my dad passed. No kid should have to watch a parent die nor bare the thought of the other parent dying as well. Gracefully my made it out into remission after a 3 year fight.
By Cathy Holt on April 25, 2015 - 12:35am
My father Passed away 5 years ago from this horrible disease. This is the first time I have reached out publicly about it. So many people have never heard of it. Our journey was devastating.
By Niki on April 25, 2015 - 12:31am
Hi Arturo, thanks for writing.Please contact Lorri for my email address.
By Arturo on April 23, 2015 - 3:22pm
There have been clusters of CJD cases all across the United States and. The National Prion Disease and Surveillance Center(NPDSC), along with the Center for Disease and Control have been closely monitoring clusters of CJD. Hope this puts your mind at rest...
By Jayme Bohn on April 23, 2015 - 3:51am
I know two people who have died from CJD both living in Portland Oregon.With in a calender year. What's going on!please send any family suport recommendations you may have !
By Arturo on April 22, 2015 - 1:27pm
I am so sorry to read of your husband's passing. This monstrous disease takes our loved one's in such haste, It is completely unfathomable. My dad passed 13 years ago, from Sporadic CJD. He fought this monster courageously for 4.5 months. Passing one month after his 48th birthday. If you would like to talk to someone on a one-to-one basis, please feel free to email Lori. She will be more than willing to relinquish my contact information. Take care, God bless..
By Niki on April 22, 2015 - 6:36am
I lost my husband with this terrible illness last May. He was 53 years old and we were married only for 9 months. He was very healthy and I cannot understand how he got this disease. He started losing weight a few months before the CJD was diagnosed but as he did not feel bad, he did not visit a doctor at that time. A month before he died, he had problems with double vision. We went to an opthalmologist for tests and they did not find any problem with his eyes. He started having problems with walking and I had to hold him in order to be able to walk. We were referred to a neurologist and he had done a brain MRI which showed that he suffered from CJD. He had more tests done and the Institute of Genetics told us to go back to the hospital. Three weeks later I lost my husband. He suffered a lot, he could not walk, eat or see. Then he fell into a coma. This is the worst disease. They say it affects 1 in a million and my husband was so unlucky. I wish that a treatment will be found so that people do not suffer in such a terrible way. He was the love of my life and I will always have him in my heart. He was my guardian angel.May God rest his soul in peace.
By Arturo on April 21, 2015 - 2:15pm
To all newcomers of the guestbook:
Welcome! we are glad you found us. This guestbook is a great point of meeting others that have been afflicted by CJD, in one way or another. CJD is monstrous disease that can attack are loved one's in a variety of ways. My dad passed of Sporadic CJD in 2002 after a 4.5 month battle. Passing one month after his 48th birthday. At that time I was 14. Trying to deny the reality of those 4.5 months. It took me a couple of years to open up and be willing to talk about this horrendous disease. Since then, I have been advocating awareness for CJD and other Prion disease. The CJD Foundation is now on: FaceBook, Twitter, and LinkedIn. Those socal media badges are below this page and upon clicking on them, they will take them to the Foundation's respected pages.In FaceBook their are also some CJD & Prion disease related support groups, (such as "CJD Family", Creutzfeldt-Jakob Disease Awareness", "Cure CJD, & "[International] CJD Support Group Network". Remember we are all in this together! Take care, God bless...
By Joe Whelan on April 20, 2015 - 3:13pm
My father passed away from CJD in 1987. At that time very little was known about CJD. I came across your website and was very pleased to discover all the information about CJD as well as the support for the families.
By Elizabeth Brock on April 16, 2015 - 8:04am
My father Robert passed away 4 months ago from CJD. I'm still having a hard time coping with his death. I'm not sure I will ever be able to accept he died from this disease. He had such a brilliant mind. So smart and excelled in anything he did. I can't quite understand how or why such a smart man could have a brain disease. It's so sad to me. God Bless everyone on this page. So sorry for your losses.
By Lee on April 15, 2015 - 12:31am
It is sad to say that my aunt passed away this past Friday evening. Thankfully she is in a better place. My father, uncle, and last remaining aunt are supposed to be going to all get tested to see if they may have it even though they are older and ours is genetic. The doctor once told them in most cases 50% of the children of a carrier would be a carrier. Well, there was five of them. We are hoping our strain has died away with my last aunt and that no one else has it
By Virginia Polo on April 14, 2015 - 11:35pm
My son's father was just diagnosed with CJD a few days ago! This is devestating!My son is only 21, and turning 22 yrs old next week!We are completely alone, our car we share has broken down and all our funds have been depleted caring for his Dad.We don't know what to do or who to turn to!We don't even have the $ to go see his father in the hospital. The world is crumbling around us!
“please contact Lori for my email address”
By Gregory Brown on April 13, 2015 - 6:17pm
I agree CJD is an extremely horrible disease. I lost my mother in February after a rapid 4 week decline. There was nothing that could be done to slow it down. It impacted her memory, walking, speech and eating. I am grateful to the doctors at the hospital where she spent the last week and an a half of her life.
By esra on April 10, 2015 - 12:41pm
Ben esra.benim annem scjd hastalıgına yakalandı.7 aydır bu hastalıkla ugrasıyoruz.biz anne sütü,ısırgan otu,domuz ve kuzu plesentası,monodoksil,amfoterisinb kullandik.sizi umutlandırmak istemiyorum ancak benim annemin mr görüntüsünde iğileşme görüldü.hepinize bol şans diliyorum.
By KIM JOSEPH on April 9, 2015 - 10:50pm
Thank you CJD for all of your support. We lost our Mom yesterday to CJD. It has been a rough 6 weeks. We are grateful to Case Western Reserve and everyone from the hospital to hospice. We will miss our Nana. She was a young 69 Mom Wife Friend Grandma .
By Arturo on April 8, 2015 - 1:40pm
I'm sorry to read of husband's diagnosis. This is truly a monstrous horrible disease, that to some cannot be believed. My dad passed away from Sporadic CJD 13 years ago. I live in Southern California too. and my dad was a patient of the VA, and in conjunction with UCLA they gave my dad and mom the 90% probable diagnosis of sCJD. My parents had a 15 year marriage that still cherishes. My dad courageously fought this monster for 4.5 months. Passing one month after his 48th birthday. Being fourteen at the time of my dad's diagnosis, this was something I refused to accept up until my mom told me of his passing. I have the hardest time dealing with the acceptance of my dad's death for years after his passing. If you would like to stay in one-to-one contact, please feel free to email Lori (at the address at the top of the page). If you, or anyone in your family has a FaceBook account, the dark blue "F" badge (at the bottom of this page) will take you the Foundation's official Facebook page. Also on FaceBook, are numerous CJD related support groups. (such as "CJD Family", and "Creutzfeldt-Jakob Disease Awareness"). You and your husband will be in my thoughts in prayers during this trying time. Take care, God bless...
By cindy on April 7, 2015 - 1:20pm
my husband was fnally diagnosed march 1st at ucla after havng problems for almost 6 months.
he is now not eatng or drinking. has anyne had any experience with an iv for fluids. im a firm believer that they feel thirst, this s the most horrible disease i can think of and am not coping well. drugs arent helping me much at all. he went from a perfectly normal man, walked 3 miles a day, general contractor and solar contractor helpng all of our friends and neighbors in september, to being bedridden, not able to talk, move or eat. i can onlu lay next to him and tell him of all the wonderful things hes done and what a wonderful man he has been to me. we have known each other since we were 5, been together for 17 years and have been married since january 23rd , 2015. he is my whole life and i have. o clue where to go from here.
By Todd on April 7, 2015 - 1:12pm
It was a year ago this week that changed my life forever. My mother was diagnosed with Sporadic CJD. My mother passed on June 29th, 2014, a week after her 68th birthday on June 23rd. This past year has been the hardest year of my life. I miss my mom so much.
I posted this on here June 12th, 2014:
My Mom started having problems last summer (around July 2013), after my grandmother’s passing (June 5th, 2013), and it got worse in the fall, especially after my stepdad’s cancer surgery. My mother took care of my grandmother for 22 months, and for the last 6 months of my grandmother’s life, she stayed with her 24/7 caring for her. My mother’s nerves were shot after this. In September of 2013, my mother and stepfather sold their home and moved to my grandmother’s house which was a very stressful time, giving away furniture, painting rooms, the moving and coordinating it, etc. In November and December of 2013, she cared for my stepfather, waiting on him as he recovered from surgery.
Between December 2013 and January 2014, I had taken my mother to the emergency room several times (about 6-7) because she had an uncomfortable tingling sensation throughout her body (mostly in her arms, chest and face) and complained of a choking feeling. When she’d lay down to sleep, she said she felt like she was choking. She had been to several Doctors with no help whatsoever and on April 7th, 2013, we had convinced her to see her doctor and have a brain scan. At that time, I thought maybe she had a tumor in the brain because in February 2014 she started having short term memory loss. In March 2014 she started having trouble writing, using the computer, remembering how to use the phone or add or subtract.
On Wednesday night, 4/9/2014, I was visiting her all evening and she was not herself. For a couple days, she was lethargic, on and off, but that night, it was bad. Bob, my step-dad, helped her in the bathroom and she could hardly walk or stand. After 45 minutes in the bathroom, she was so weak and distressed I thought she was having a stroke so I called 911. She was taken to the hospital and they did another head x-ray, a brain scan, an MRI and a spinal tap. By the second day in the hospital, they told us they were 90% sure she had CJD. Something happened that night, her face grimaced and it was very scary and she has not been the same since that night of April 9th, 2014.
Currently, she is having a hard time saying what she needs to say to communicate, progressively getting worse. Her ability to hold a spoon, stand, etc. is getting worse. She has good days and bad and can still walk when she is not overly tired. She sometimes suffers with insomnia and she gets paranoid thinking people are trying to take things from her, her house, her cats, etc. We have contacted Hospice and are now starting that process. I still wake up at night, can't sleep and questioning if this is really happening to my mom. It's been very difficult.
By Arturo on April 5, 2015 - 2:15pm
Happy Easter Sunday Family! Even though it may pain us to celebrate the beautiful day with our loved ones. We must remember that they are in a better place, and when our time comes we can rejoin them.
By Arturo on April 4, 2015 - 2:21am
I am sorry to read of your husband's passing. CJD is an awful disease, that no long lasting marriage should ever tarnish. My dad passed away 13 years ago from Sporadic CJD. For the most part we were able to keep my dad home until his final days. passing in a nursing home. My parents had a 15 year marriage that still cherishes. My dad courageously fought this monster for 4.5 months. Passing one month after his 48th birthday. Being fourteen at the time of my dad's diagnosis, this was something I refused to accept up until my mom told me of his passing. I have the hardest time dealing with the acceptance of my dad's death for years after his passing. If you would like to stay in one-to-one contact, please feel free to email Lori (at the address at the top of the page). Take care, God bless...
By Paula on April 2, 2015 - 10:56pm
My mom died almost 2 years ago. It was April 20th 2013.
My Dad had a Stroke due to my moms illness- Feb 22 2013.
This time of year is extremely hard. I miss them both so much!
I hate thinking about my mom when she was sick- it wasn't her at all! Why did this happen? What cased this?
Will I ever have answers? I miss my parents so badly but I'm glad they're together.
Take the time to tell you're loved ones how much they mean to you- EVERYDAY!
By CAROL RABINOWITZ on April 2, 2015 - 5:29pm
My husband of 40 years passed away March 13.2014. He was the doctors at Columbia Hospital did MRI,Spinal Tap,etc. We were told it was CJD. He was then transferred to Calvary Hospice Hospital.
We agreed to donate his brain for testing (Columbia Hospital).
I am looking for support of my loss.