Cure CJD

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

It’s been a while. Where to start? How about with “24?”

It’s hard to be incredulous about Fox’s “24” when the show is 11 episodes in.  But what were the Fox writers thinking?  Better yet  —  get them working for the U.S. government because they obviously know how to cure prion diseases!  How on Earth does Jack Bauer come back from the weaponized strain of CJD that was killing him last season?  There’s no explanation of how he got well.  He shows no signs of ever being sick!  I guess that’s Hollywood for you.  Damn.

I would have written this season’s “24” by staying true to CJD and what it does to the human body. Even Jack Bauer is susceptible to that.  Sure, my “24” screenplay would have been more of an under-budget psychological thriller taking place on a hospital room set.  But to the writers of “24,” I say this: as someone who has lived through watching a loved one die of the terminal terror known as CJD, I can tell you my mother’s final days were more stressful and action-packed than any Hollywood writer could imagine.

I’ve been too busy to think about CJD  —  which is often a good thing.  But the good news is that I finished my college degree finally.  I’ll be graduating with a BLS from Boston University in May.  BU has sucked up a ton of time over the last three years.  It’s the main reason I’ve never gained momentum with the blog or with anything I’ve wanted to do regarding raising CJD awareness.

I’m ready to usher in a new era where I can find the people in charge, ask them my burning questions, and post what I learn here.  We’ll see how that goes.

There’s so much more I want to learn about this disease that killed my mother, her brother, and their uncle.  There is even more I want to learn about my own chances, genetic testing, and who the hell is doing what to stop this disease.

–@heatherlarson

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March 13, 2010 - Posted by | Uncategorized | , , , ,

5 Comments »

  1. Well Heather, I believe there is a treatment for CJD – it’s called Vitamin B1, which was used successfully for treating a brain wasting disease in livestock back as far as 1968 in Australia. I wonder why doctors aren’t using this treatment for humans with brain wasting diseases – I wonder how long it will take to get this message across to someone who really wants to know.
    ainee

    Comment by ainee | March 17, 2010

  2. While I choose to respect and and every idea brought up about curing CJD, i must also acknowledge when some ideas are, sadly, laughable. With that said, it’s important to keep an open mind in finding a cure because, after all, we have NOT yet found a cure. Someone may or may not want to research your B1 idea someday. I don’t mean to be rude and I don’t mean to condescend, so please don’t take this the wrong way.

    Researchers have tested a variety of substances in treating CJD. Oxygen, quinacrine, pentosan polysulphate, and I think even copper if I remember right. The testing will continue until we find the right one. End of story. You cannot come to this blog claiming you’ve cured CJD already in yourself or in animals. Many have showed up on my blogs over the years claiming just that.

    Believe me, if you’ve got the cure, the world will know. That’s how these things work.

    Respectfully,

    Heather Larson
    @heatherlarson on twitter

    Comment by CureCJD_Heather Larson | March 18, 2010

  3. Heather,
    I’m not claiming VB1 to be a cure for anything. I’m saying the VB1 will suppress and eventually reverse horrific symptoms similar to CJD. The secret in the VB1 treatment is in the dose quantity, which vets in Australia worked out in 1968 or before, as a successful treatment for a brain wasting disease in livestock – this IS a scientific fact.

    After all, our brains and nervous systems would work much the same, and can display similar toxic/neurological symptoms – give or take a few and put into human terms.
    And there isn’t anything laughable about horrific spasms, involuntary, movements, Opisthotonus, darting tongue – and the list goes on. I told my doctor in 2001, after I did some research, that my symptoms were like those of Kuru and Scrapie.

    I thought your blog is to perhaps find those who have experienced something that many will not, and perhaps you can pass information on to those in medical avenues, who may be interested in such information.
    Regards
    ainee.

    Comment by ainee | March 18, 2010

  4. Ainee,

    If you are saying a dosage of vitamin B1 is reversing symptoms, you are saying that it cures CJD.

    Where is your source? Where is your research? Did you get this from a medical study?

    Because it seems to me that if vitamin B1 doses were able to reverse (cure) CJD symptoms in cattle and in humans, we probably would have started using it…in 1968. We’re not.

    Thousands of human beings and who knows how many farm animals have died since 1968. Gee, you think someone would stop this, wouldn’t you?

    Furthermore, if you really believe this is true, you would have facts to back it up. Instead, you have simply made comments on any CJD blog or brain wasting disease blog you can find.

    A quick search on Google of “vitamin b1 1968 australia cjd” brings up your posts on others’ blogs.

    And who is “ainee?” I sign my first and last name on my blogs. I am an open book. I have shared EXTENSIVE personal information about my mother’s death and my family’s genetic mutation. I hide behind nothing.

    So until you are ready to point to actual facts and research, you are going to continue to be laughed at an ostracized by people who have lost loved ones to CJD. Your blog comments are irresponsible and inconsiderate of those who are grieving and those who are trying to make a difference. If you were really here to help, you would:

    1. Show some respect. I have watched my mother die of this.
    2. Use your real, full name when you post.
    3. Point to facts, point to research, point to published scientific articles.

    Respectfully,

    Heather Larson

    Comment by CureCJD_Heather Larson | March 19, 2010

  5. Heather,
    My reply is under your post Making a difference takes facts – March 19, 2010
    ainee

    Comment by ainee | March 19, 2010


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