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By nora on March 5, 2014 - 2:55pm
I would like to post this story from a lady who lost her husband to CJD it may help others in the same situation,
By nora on March 3, 2014 - 10:55am
To LJPerry, I am so sorry to read that your dear husband has CJD, sadly he is not alone, more and more people are being diagnosed with this dreadful diseae, if you go on facebook there is a very supportive group 'Creutzfeltd Jakob Disease Awareness Group' there are nearly 800 members most if not all have been directly affected by CJD/vCJD, the numbers are rising daily, I am sure you will find much support there.
By LJPerry on March 2, 2014 - 11:33pm
My husband has been diagnosed with CJD after 18 months of tests. The neurologist thought he had a different form of dementia because he doesn't have all of the symptoms of CJD and he is still alive. My husband remembers people and things that have happened but he gets mixed up in our home and cant't find everyday items like silverware, his clothes, the coffee pot; however, he still can fix coffee if I help him find the coffee pot and the coffee. He gets mixed up if he goes outside and then cant't find the house and doesn't seem to know that anything is wrong. It is so sad and breaks my heart to see him this way and I know it will get much worse but I am taking a day at a time. Wish there was a support group for me and my children and grandchildren. I feel bad for anyone who has to go through this.
By Heather Wood on February 27, 2014 - 4:54pm
My mom passed away from this monster in Aug of 2013. She was a 55 year old nurse who was always so strong. She was my mom, a great gamma to my son and my best friend. These last 10 months have been the worst months of my life. Everyday I think of her and miss her so much. I hate CJD and what it did to my mom and so many others. I would like to start a support group for people in Arizona. If anyone can help me with this it would be greatly appreciated, thank you.
By Arturo de la Cerda on February 27, 2014 - 12:34pm
My dad had CJD and passed 11 years ago. Please feel free to email firstname.lastname@example.org and she will more than willing to relinguish my contact information. Take care, God bless...
By Joyce on February 26, 2014 - 4:28pm
Hello. I am looking to connect with others who have family members with CJD. My husband is currently in the hospital with late stage CJD and I am searching for emotional support at this difficult time.
By Arturo de la Cerda on February 26, 2014 - 1:24pm
Buenos días Isidoro,
Un diagnóstico terminal como la ECJ es difícil de aceptar, pero como usted ha dicho en la Palabra de Dios que dice que dar y vamos a darle apoyo para ayudar a que usted y su familia a través de los tiempos difíciles. Mi padre murió hace once años a partir de la ECJ esporádica. Mi papá tenían este enfermedad durante cuatro meses y ahalf, pasando un mes después de su quincuagésimo cumplianos. Ten cuidado, que Dios los bendiga ...
Good morning Isidoro,
A terminal diagnosis and CJD is difficult to accept, but as you said in the Word of God says to give and will give you support to help you and your family through hard times. My father died eleven years ago from sporadic CJD. The disease had this for four months and ahalf, spending a month after his fiftieth birthday. Take care, God bless ...
By Isidoro Bravo Pavón on February 25, 2014 - 5:17pm
OK, sorry if i writter in spanish; pues mi mama esta actualmente luchando y al parecer los doctores del centro nacional de neurología en México, D.F., dicen que un 85% del diagnostico se inclina al síndrome de Jakob situación difícil de aceptar para nosotros sus hijos que somos 6 y para mi papa, es importante para nosotros saber si el diagnostico es el que nos indican que hacer, que cuidados debemos tener para darle una mejor calidad de vida a mi mama y que apoyo podemos tener por parte de la fundación ya que los equipos que se necesitarían son de muy alto costo aqui en México lo cual no podemos absorver, por lo cual les escribo solicitando su apoyo en todo lo que concierne a está enfermedad y podamos brindarle a mi mama lo mejor.
Dice Dios en su palabra al que pida se le dará, esperando contemos con su apoyo me despido mandandoles mis bendiciones.
By Lauren Piriz on February 24, 2014 - 3:32pm
My husband carried the gene mutation for a Prion Disease called GSS. It is very similar to CJD, but duration of sickeness is longer and onset earlier in age. He passed away 1/14/14 at only 36 years old. We have a 2 year old son that has a 50% risk of carrying the same gene mutation. It is sad that many doctors do not know about Prion Diseases, as you can see from all of our stories, they are more common that we think. I agree that their needs to be education in the medical field as well as in our own families. I will raise my son knowing what his chances are and encourage him to be tested. But if I may share some words of inspiration to anyone reading this. I spent many nights crying, feeling helpless and like a victim. I let this disease consume my every thought and beat me down as a wife and mother. But for my son's sake, I will not allow this disease to victimize another person. It will not beat us...we will beat it. I was told a saying that does not ring more true now: IF YOU CANT CHANGE A SITUATION, CHANGE YOUR ATTITUDE TOWARDS IT. We are not vitims....we were put in this situation to do something about it. We must all raise awareness with our stories and fight for an perminent eradication of this disease.
We are not alone, we are all bound together by this. We must fight.
By nicole yawn on February 17, 2014 - 5:31pm
Harry, there is a group on FaceBook, CJD Family, and there are quite a few of us survivors of fCJD. We'd be happy to have you join us. It's a great place to connect with other families struggling with all the ins and outs of the monster CJD. Of course, the CJD Foundation has been phenomenal in assisting us as well.
By Harry on February 17, 2014 - 8:59am
Reading about this reminded me sadly of my grandmother -she passed away now-. the worst part of it is, that my mother, she is over 50 is showing the early symptoms already. I'm sad, angry, disappointed and I don't know what to do. Harry
By nora on February 16, 2014 - 10:36am
Very sad to read about this 38 year old mum from Maine who has been diagnosed with CJD
By tina carlisle on February 15, 2014 - 9:50pm
My understanding is that CJD cannot be spread from touching, kissing foreheads, holding loved ones. I am not a doctor. I do know that I kissed my mother, held her hand, fed her, wiped her mouth and assisted in other areas of her care while under the monsters claws. I am so very sorry you lost your father from this horrible disease. I would not change anything I did for my mother. Did you have an autopsy done on your father. We were told by the funeral home we used, two prior to my mother's death, that if we had an autopsy performed they would not embalm or allow open casket. There reasoning was fear of spinal fluid leakage onto the body while being autopsied. At the time, mom was so close to death, we backed out of the autopsy. IF they had informed us a few weeks earlier, we may have been able to make other arrangements. I regret this decision, as I now realize the importance of verifying the type of CJD she had. There is no doubt in my mind that her clinical diagnoses was correct. I know that as a survivor of someone who had CJD, blood donation is not allowed, nor tissue or organ transplant. The CJD Foundation is an excellent source of answers, they have a toll free number at the top of this page, I urge if you have questions to talk with them. They are wonderful caring people more educated on the subject than I am. My mother died in Aug 2011. I hope this settles your mind some. You are not alone , many of us have questions that at this time there are no answers. There is also a closed CJD Family on face book. Just friend request, it is a wonderful source of comfort and understanding, since we are all family who have been through this monster.
By Ben on February 14, 2014 - 6:05pm
Friends, I go to Mayo Clinic Again next week for two weeks of testing to see what is causing early cognitive decline in someone only 29 years old (myself). While there I will carry the memories, thoughts and hopes of any family or individual suffering from CJD or any dementia. Thanks for the support from this forum.- Ben
By nicole yawn on February 14, 2014 - 7:23am
@Cynthia Hart, our family carries the genetic mutation. My two main reasons for getting myself tested was to have a hand in eradicating it from my family line if I were a carrier before my four daughters began having children and to make specific preparations for my care if I were positive. I firmly believe we should share our family information to those of our descendants when they become of adult age as to give them a fully informed choice of whether to have kids or not with this monster. Best wishes to your family.
By Cynthia G. Hart on February 12, 2014 - 6:18pm
My grandmother died in the late 1980's...88 or 89. We were told in the hospital she died of CJD. It has been a cloud over our family's heads since, not knowing if we have inhereted it or contracted it through other forms. She had what we thought was a stroke, took her to Dr. and they said she had heart blockage. She underwent a triple bipass before Thanksgiving and was to come home Thanksgiving weekend. But she never came home at all. She started showing signs of dementia, halucinations, then she forgot who we (her family members) were, then she couldn't speak, forgot how to chew, had to be tube fed and later went into a coma and after being placed in a nursing home for constant care in December or January died in April. The doctors told us to burn or bleach everything of hers we kept and we couldn't touch her without gloves and masks on. It was horible for her children, 3 boys and 1 girl. The girl is my mother. She took it soooo hard. I remember visiting my mama in the hospital and nursing home and feeling so helpless and confused. I am now turned away from donating blood or plasma and I'm not sure if I carry the gene or have passed it down to my daughter and her to her two boys. We can't afford to get any testing done to check so we just keep on wondering if this too will be our fate. I wish we had asked for an autopsy on mama to be sure. But we didn't....I'm not sure why I'm emailing you this, but I just thought I would.
By Arturo S de la Cerda on February 12, 2014 - 2:32pm
Sorry to read of your dad's passing. My dad passed away from sCJD 11 years ago. From what I know about transmission their is a theory that the disease could be passed down on the blood line. The Foundation attempted to clear this up soon after the Red Cross put a band on blood relatives donating blood/organs. Unfortunately this ban still remains though.
A lot of medical professionals and funeral home directors are unaware of these diseases. In some states, CJD is not a required reportable disease. This needs to be changed until these disease are as concerned as Cancer. Hope this helps. Take, care, God bless...
By Rita Martinez on February 12, 2014 - 12:55pm
My dad died of CJD back on Dec. 17, 1999. We had no idea what this disease was much less how to handle the nightmare that came with it. This is extremely horrible and for no funeral homes to not want anything to do with a family that has used them for over 50 years was extremely hard. My question for any one is I need to know about transmitting of this disease. I kissed my dad on the forehead a few minutes after he passed and he had a very sweaty forehead. I wasn't thinking, I just knew I was devastated my dad had passed.
Can anyone tell me if this horrible disease can be transmitted in this manner please.
Thank you and wanted to let you all know that this is a hidden disease no one talks about. When I mentioned to my specialist this is the disease my dad died of and within weeks after he was confirmed with it. These doctors don't believe me and say they haven't heard of anyone dying in Texas from this. REally? Well maybe funeral homes, hospitals etc. aren't nationally reporting it but it's happening more and more than these specialist want to admit to.
By Jenny on February 7, 2014 - 12:45pm
Hi Lauren~ I'm sorry to hear of your husband's passing. My dad died from sCJD almost 2 years ago (hard to believe). I encourage you to attend the CJD Foundation Family Conference this summer. I went last year, for the first time, and found it very interesting and inspiring. It's an opportunity to hear the world's top prion disease researchers talk (and, can be a great way to find one that may resonate with you to contribute in a small way to finding a cure), as well as meet others who, unfortunately, are/were in the same situation. There is also (or at least there was last year) a private meeting for those affected by genetic prion diseases, as well as counselors to talk about the issues of whether to test or not. Wishing peace to you and your son.
By Lauren Piriz on February 6, 2014 - 3:26pm
I join you in advocating awareness for Prion Diseases. I reached out to the new NYC mayor asking to make November 12th - International CJD Day. I sent the request to numerous people. My huband was a NYC Police Officer and I have the full support from them. I have family in San Diego, I will spread the word about your fundraiser. Best of luck with your mission.
By Arturo S. de la Cerda on February 6, 2014 - 12:31pm
I'm sorry to read of your husband's passing from GSS. My dad had sCJD, passing after a 4.5 month battle 11 years ago. He passed when I was 12 but, since his passing I have been advocating and awareness of Prion disease. I held a fundraiser for for the Foundation a couple years ago at a local pizza parlor. This year I plan to hold a walk as well at my college.
I have the fortunate opportunity to attend California State University, Channel Islands, which was the infamous Hotel California.If your or anyone in my CJD Family is around Southern California (specifically Camarillo, CA) around the month of April I invite you to stop on by and participate. Take care, God bless...
By Lauren Piriz on February 6, 2014 - 9:23am
My husband just passed away on 1/14/14 from Gerstmann–Sträussler–Scheinker syndrome (GSS), which is another genetic form of a Prion Disease. He was only 36 years old. I am left with a broken heart and a 2 year old son that has a 50% chance of carring the Prion gene mutation that causes this disease, same as CJD. I am devoted to spending my life helping my son have a fighting chance. I took care of my husband at home for 7 months until this cruel disease finally took him. It was the hardes thing to watch him go from a strong, vibrant NYPD Police officer...to what he became. I refuse to go through that again one day.
If anyone is in the NY (Queens) area - I plan on starting a WALK each year to raise money for research. I would like to organize as many people as possible so we can eradicate Prion Disease's for good!
Is there anything else we can do to help funding or help fight for a cure? I will do whatever it takes for my son.
By Jennifer Jordan Barcelo on February 3, 2014 - 7:02pm
My apologies for the duplicate post. My mom was just officially daignosed with sporadic CJD on January 17th. She lost the ability to initiate speech around early December, around 7 weeks ago (hind sight is 20/20). She got lost driving to my house on Christmas Eve so we admitted her Christmas Day. She stopped eating a few days ago and drinking. We put her on oxygen Saturday, 2 days ago. My heart is breaking. She is the best mom and grandma to my children, all of her grandchildren. We just learned about this disease in January, last month. I cannot believe how quickly she has declined. We live in Houston and she is on hospice now. I worry so much about my dad now. He is amazing, taking it day by day. We all love her so much and miss her so much already. She is still with us, but no longer communicates and rarely opens her eyes. I pray to God every day they find a cure for CJD and that no other families go through this. I am interested i the closed facebook group as well and will try to contact Tina. Thanks to all of you for your notes on here. Just reading all of the posts help.
By Arturo on January 31, 2014 - 2:07pm
Sorry to read of your dad's passing. This disease is truly unmerciful. My dad passed from sCJD 11 years ago. He taught this monstrous disease courageously for 4.5 months., passing a month after his 50th birthday. If you would like to keep in one to one contact with a family please feel free to email Lori, she will be more than willing to relinquish my contact information. Take care, God bless...
By Darlene Brothers on January 31, 2014 - 11:32am
My father has just passed away with this. It is so devastating to watch how rapidly it destroys a person you love.
By nora on January 26, 2014 - 10:36am
For anyone who wants more information on CJD this YouTube video by Prof.James Ironside is very informative
By tina carlisle on January 16, 2014 - 5:06pm
I am so very sorry to hear of your husband's diagnosis. In August 2011, my mother succumbed to this horrible disease. If you would like to speak personally, you may contact Lori at the foundation for my personal information. I know how lost and alone you must feel. There is also a 'CJD Family' closed group on face book. You can friend request me and I will respond. The face book family is all people who have been where you are, you can ask questions, vent emotions, the family is very understanding compassionate people that are there for you. Treasure each and every moment. If your husband is still able to communicate let him say all that he needs to say. Do not be afraid to get in bed and hold him, he will feel the love and this is a great source of comfort for him. Sing songs, read to him, use whatever means of communication you can. I cannot say enough good things about hospice, they are God's angels working on this earth. The CJD Foundation is a wealth of information, do not hesitate to call them. You are not alone any longer, I am not a doctor or therapist, just a daughter who lost her mother to this monster. My heart aches for what you are going through. You are inside the funnel of a tornado and everything is spinning out of control. I open my heart to you and invite you in to have someone who's been there to lean on. Sending strength and courage to get through each new day.
By Megan Grabski on January 16, 2014 - 10:30am
Thank you for the truly powerful presentation/Q&A session last evening in Pittsburgh.
By Chris Beekman on January 16, 2014 - 1:51am
I lost a dear friend, mentor, and 2nd father today to this horrible disease. It was very sad to see such a great man have to deal with memory loss and quick deterioration. Gary Nelson from Hastings, NE will always be remembered as a great man with a kind heart and could always make people laugh. Praying for a cure for this so others do not have to experience such a loss. It was only a few short months that took him from the everyday person to his final peaceful place outside this earth. For others that ma know someone effected by this disease, please remember to cherish the time, an hold on to the memories because nobody can take these from you.