Cure CJD

Heather Larson's experiences in helping find the cure for CJD

There is no cure for CJD

I am very sorry. Where we stand today, there is still no known cure for CJD. I believe one exists and we just haven’t found it yet. 

Every few weeks someone finds this blog I’ve had for the last eight years, which is called “CURE CJD.” It is called that because that is the goal — to eventually cure CJD. This blog is not called that because there is a cure for CJD; there is not. Today, April 26, 2013 no cure for CJD exists. 

So please understand that before you email me asking me to give you information on the cure. It is insulting to me as someone who has lost a mother and uncle to fCJD, it’s socially awkward, and shows you never read much of this blog at all. There are eight years worth of writing here. I know you won’t read more than whatever posts are currently appearing on this front page. 

This blog started as a place for me to express my grief and suffering over the loss of my mother to CJD. I have been extremely open and honest. I have been transparent in every way. This blog hasn’t made me a cent. It is a labor of love. 

Then my uncle died in 2008. We were not on speaking terms when he died. But what that death did to me was kickstart my life in an odd way. How can you sit by and watch family members get picked off by a dreadful disease without having it affect your every daily life choice? That’s when my bi-anual mid-life crises began (laugh) and the amazing effort to complete bucket list items began. 

So if you read through all these blog posts (and the early ones from eight years ago at CJDtalk.blogspot.com) you will not find a cure (yet) but you will find my story. 

People still think a neurodegenerative brain disease in younger people is something that is taboo. People still mistakenly think this is “mad cow disease” and therefore the patients are “mad” or “crazy.” People still think this only happens to one in one million people, which is erroneous as there is no current system in place to offer a clinical diagnosis of CJD in a hospital setting. There is no current system to track deaths in America by CJD. The only definitive diagnosis is given after death in an autopsy. 

And I am tired of writing about this because I have written some version of that sentence a million times on here, in forums, and in emails for the past eight years. 

I recently found out there is also no current system in place to track deaths in America by a similar disease, multiple sclerosis. More on that later. That’s a whole separate post! 

So here is where were are at. There is no cure. Yet. I’ve been spending much of the last eight years finding my way and living a life I can be proud that I have lived. This is because I could be in danger of dying of fCJD too. I am still refocusing the efforts of this blog. I am currently doing my first Team In Training event for the Leukemia & Lymphoma Society (to avenge a friend’s suffering by blood cancer). Because of this experience, I am learning hard lessons on patient advocacy, awareness raising, and fundraising. 

I am learning very good lessons and appreciate this experience so much! I’d like to take what I am learning and apply it to fundraising for a disease I find extremely difficult to make people care about — CJD. Cancer is common and, in cases like my friend April’s AML, it is curable. 

But CJD is growing more common. It is insulting and wrong on many levels, but to people unlike myself who aren’t in the trenches of this disease, CJD is still honestly “rare.” It has never been something I could make people care about in eight-second sound bites. Every patient suffers different symptoms and a different length of disease. Stigmas surround CJD. It’s not media-friendly.

I am having trouble some days getting people to care about blood cancers and my LLS fundraising — and everyone knows about cancer. How do I get them to care about something that is even harder to understand? 

I am closer than ever to being able to answer this question…

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April 27, 2013 - Posted by | Uncategorized

8 Comments »

  1. Heather, I just found your blog last week and I really enjoyed reading it. It gives a human touch to a very inhumane disease. Seeing first hand in my family the devistation of another very similar rare prion disease-Gerstmann-Straussler-Scheinker(GSS). I agree, there will be a cure, hopefully in the next 10-15 years. Unfortunately all studies take time and money and quite frankly, very few people have ever heard of these diseases. Medical studies are being done on a drug called Astemizole, which was used as an oral hismanal years back. One of the ingredients may prevent the proteins from misfolding. I spoke to one doctor in the field and he is optimistic so far. They are doing IVIG trials as well for Alzheimers patients and the results are supposed to be announced at the International Alzheimers meeting in Boston in July. Finally, they are also studying Mesenchymal stem cells in Parkinson patients in Italy. These are studies that I know about in my primative research, hopefully there are more. Prion diseases like CJK and GSS are a sad-cruel way to die. I hope and pray a cure is found soon. Keep up the good work.

    Comment by Paul Staropoli | April 30, 2013

  2. I have had a few GSS folks cross my path over the years. Talk about another “rare” and misunderstood disease… I am definitely going to look up all these studies. Thanks for the info! If we could only figure out why the prions misfold, we’d be over this. Or so I was told nearly 9 years ago. Thanks for reading, and for the comment & info.

    Comment by CureCJD_Heather Larson | May 8, 2013

  3. Thank you for sharing your story. My husband lost his father, grandmother, and now his sister is dying with cjd-ffi. We are traveling this week to the Cleveland clinic to have genetic counseling done. We know his one brother is negative as is his aunt. We have 2 small children and what was gut wrenching is his mother hid the cjd diagnosis from him and his siblings and we only found out the truth of the family affliction after her death. She had threatened other members of the family with legal action if my husband or his siblings were ever told the truth. It’s been an awful insult on top of the shocking prospect of having the gene. I am hopeful like you in the research and I also think the two anti body study’s out of the MrC prion clinic in London as well as the fact that researchers have identified the tail portion as the faulty part of the prion as promising. I pray for you and my family.

    Comment by Alex | August 19, 2013

  4. Wow, Alex! I am floored — and it takes a lot to shock me. I can’t believe someone would hide the disease to the extent that they would threaten others with legal action — what kind of legal action? What can you possibly threaten someone with in regards to the law in this situation? That is very sad. What was her motivation? Sounds pretty controlling. We all deserve to know the truth of who we are and where we come from regarding our family lineage. We all deserve to know our genetic possibilities if we so wish. I really do think it’s all a crapshoot. My grandfather (the carrier in our family is still alive and I am guessing he is in his 80s now). He was one of 14 children and only one of his siblings is known to have died of CJD. A few died young of other things, so they could have been carriers but we’ll never know. My mom and uncle both died at age 56 but their younger sister is still alive (to my knowledge).

    I did accept my mortality at a young age. But I still have not chosen to know my test results. I am still unsure about wanting children at all, or if I’d even go the biological child route as it is. Negative or positive, we all have to make the right choices for our lives. If you need your test results in order to make those decisions, then you deserve to have them. We are all different.

    I am mad at your mother-in-law for you! She took away a great deal by hiding this information. I hope other families reading this will understand that if they are considering withholding genetic test results from future generations. Please know this is unethical for you to hide this information from those affected by it. Keeping this information secret is wrong.

    Comment by CureCJD_Heather Larson | August 19, 2013

  5. She was a very controlling person and the damage she has done by hiding the information from my husband and his siblings has just added to their pain. They have traced their family history and know their grandmother, great aunt, dad and now sister all had some sort of cjd. Their dad died very young at only 32. His sister is 51 and his grandmother was 69. We found the papers in a safe after she died cleaning out the house with death certificates listing cjd as cause of death and it was a total shock as they had always been told each had died of cancer. Hiding the information is never the right call. I will never understand why she did it. I am so hurt and angry because we did not have to be suffering like this in utter shock.

    Comment by Alex | August 19, 2013

  6. If you or anyone in your family can, please join the study I am participating in at UCSF. Here’s some more information: http://memory.ucsf.edu/research/studies/prion.

    I think the best revenge is to live well — and carve a new path where we all might make strides forward in this disease together. Take your power back. =)

    Comment by CureCJD_Heather Larson | September 10, 2013

  7. I cared for a patient that I believe may have been related to someone that posted to this thread. Researchers need to focus on slowing the progression of GSS and other PrP associated disease by interfering with the rate of damaged caused by breakage of the fibril structures which have proven to be associated wih the disease process. Since caring for this patient I have gone on to get a degree in Biotechnology and so understand the disease process from a fresh perspective.

    Comment by Jes Kychler | February 2, 2014

  8. Hard to tell, I don’t reveal names or info (even if I had it).

    Comment by CureCJD_Heather Larson | February 10, 2014


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