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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.
Please do not post your email address in your message.
Unfortunately, over the years, many of our families have received emails claiming undocumented and dangerous claims about “cures” and medication and/or vitamins to be taken. Our most important goal in hosting this Guestbook is to provide a safe space for you, our families. If you want to be contacted by others send your name and email address to firstname.lastname@example.org. Add to your post “please contact Lori for my email address” and we will provide it promptly. While this additional step may seem cumbersome, it is important for us to take whatever measures possible to maintain this safe environment. Rather than remove the Guestbook completely we are adding this layer and will remove posted email addresses but not your messages. Also as an additional step to prevent spam from being posted, we have added a "Captcha" module. Please type in the letters and numbers when prompted.
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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.
By nora on April 2, 2015 - 11:13am
I am sorry to read that your sister died from CJD recently, you ask about a blood test, I do know that there is a vCJD blood test developed by Prof.John Collinge at the Prion Clinic, UCL, London and from what I have read it may detect sCJD. If I were in your position and wanted to be tested I would contact the Prion Clinic helpline or e-mail them I am sure their test is available to families affected by CJD, but you may need your GP to help you obtain it.
By Arturo on March 27, 2015 - 1:59pm
I am sorry to read of your mom's suspected Sporadic CJD. diagnosis I know this feeling all to well. Our loved one's our tested for every other (possibly treatable) disease, and when that high probable CJD diagnosis is made physicians there is no going back. I say probable because a firm diagnosis cannot be made until tissue biopsy or upon autopsy. My dad passed from sCJD 13 years ago. My dad went through a battery of test, when it finally came down to a 80% probable diagnosis of sCJD. My dad courageously fought this disease for 4.5 months. Passing one month after his 48th birthday. I know that anxiety your feeling, a feeling of disbelief. I was 14 when my dad was ill. Post discharge from the hospital while my dad was still somewhat lucid, he told me that he was sick and this was something I refused to believe for years after his death. If you have a FaceBook accoung the blue "F" badge at the bottom of this page will direct you to the Foundation's FaceBook page. Also on FaceBook we have numerous CJD related support groups. If you would like to keep on one-one contact please feel free to email Lori and she will willfully relinquish my contact information. Take care, God bless...
By Brigitte Papp on March 26, 2015 - 10:42pm
my mother is suspected to have sCJD. but her onset seems so different...I'm at a loss and have many questions, not to mention how distraught! I don't even know what else to say right now....please contact Lori for my email address
By Georgia Souza on March 25, 2015 - 6:42pm
My sister, who was 69 years old died of CJD on Jan. 24, 2015. Just wondering if inherited, should I take the blood test to see if I may carry it? We had never heard much about this disease before she got it. I don't know yet if her's was inherited. Can they actually tell from a blood test if you carry it, because it took them a long time to diagnose this in her. Thank you, Georgia
By Arturo on March 23, 2015 - 3:30pm
I'm sorry to read of your mom's death. that 1:1,000,000,000 statistic, is severely askew. Dr, Gershwind , a head medical physician at UCSF in Prion disease, said it himself. My dad passed 13 years ago from sCJD. He battled this monstrous disease for 4.5 months, passing one month after his 48 birthday. If you have a FaceBook account we have numerous CJD related discussion groups.(Such as "CJD Family"). Just clink on the "F" badge at the bottom of this page and it will direct you to the CJD Foundation's FaceBook page. Just search for "CJD Family, "Cure CJD", or " Creutzfeldt-Jakob Disease Awareness". You will see those aforementioned discussion groups. Or if you would like to keep in touch on a one-to-one basis, feel free email Lori (at the email address above this page) and she will be mor´than willing to relinquish my contact information. Take care, God bless...
By Lauren Stanilious on March 23, 2015 - 1:11pm
Hi, my name is Lauren, I lost my mom to this horrible disease January 22, 2015. She was my best friend, like my twin and am so lost without her. Trying to get through this process of grieving as I am new to this whole new world.
I am searching for answers as all the stories I read all over the web, etc., what has research found on why the proteins start folding and creating the symptoms. My mom was the poster woman for the healthiest 72 year old and never was hospitalized. I would love to understand where we are at in this realm of finding out what starts it and even though it's like Alzheimer's, there still is no test to determine what it actually is and there's no drugs, unlike in Alzheimer's to halt the progression.
What are the field researchers doing to help these people and I have to say with all the stories, this is not 1 in a million and more must be done. I'm completely devastated as to what my family and I had to witness in 8 weeks of my mom's devise.
By Manmeet on March 21, 2015 - 11:46pm
In my mother's case, she has not been talking & stopped responding since 8th Jan 2015. Since then we feed her liquid diet using feeding tube. The last she spoke to me was on 7th Jan night. On the 8th Jan morning she woke up and was completely mute, not responding at all.
Doctors have asked us to give her Ativan 1mg bedtime, and Ultracet (pain killers) twice a day. She has been in this mute state for almost 2 1/2 months now. She feels senses in her feet when we touch her.
We have been told by the doctors that she will remain in this state and that no medication can help her now.
By Amanda on March 21, 2015 - 10:01pm
Thank you Nora, I will join the group. Manmeet, my father-in-law only slipped into a coma like state 8 hours before he passed away. Up until that point, he was completely conscious and talked to us everyday. The day before he passed, he called my husband by name, the first time he had done that is over 3 months. As Arturo said, each person is different. I read all of the websites and monitored his progression through the disease. For the most part he went through all of the "stages" I read about. I am so sorry you and your family are going through this. My thoughts are with you.
By nora on March 19, 2015 - 7:27am
To Lee, Amanda, Manmeet, William and to those families who have been affected by this awful disease who would like to raise awareness of this disease please feel free to read and comment on the 'Creutzfeldt-Jakob-Disease (CJD) Awareness' facebook public group, the CJD Foundation also promotes awareness on this facebook group.