Cure CJD

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

What’s going on in the world of CJD?

I haven’t been following CJD much lately.  It’s my firm belief that you have to step away from it in order to live a normal life.  I know people who follow any CJD-releated news daily, and that’s great. But that’s not me.  So I wanted to just take a minute and cruise the web for some interesting stories to share, just to see what I could find.  Now that I’m no longer a Boston University student, I have plenty of time to catch up!

We’ve all had to move on with our lives since losing someone to CJD.  But think about this: a grandmother is raising her grandson after losing a 26-year-old daughter to CJD.  The disease is always a life-altering experience for those left behind.  How has it altered yours?

With all this free time now as a new graduate, I better watch Food Inc.  — especially because it mentions how cows factor into the whole ugly thing that is CJD.  Have you seen it yet?

Do the eyes have it?  A clinical diagnosis for BSE in cattle, I mean.  Can scientists look into a cow’s eyes and see if that animal is carrying a prion disease?  It’s certainly possible.  It could also be a lifesaver if it works, since our government still refuses to test every cow meant for human consumption to ensure BSE isn’t passed to humans.


June 10, 2010 - Posted by | Uncategorized


  1. Let me start by saying Thank You. Thanks for your openess.
    I feel as if I ‘m fairly new to this disease although, it took my aunt 3 1/2 yrs ago. Believing it was a rare disease we never thought any more of it…. until it took my father 3 months ago. Since then i’ve received the information most daughter’s would dread– it’s familial. In truth, I kinda of suspected it but just finally received confromation.

    Today– what do I do? Being a 32yr. old mother of a beautiful 10yr. old girl… Do I get tested? Do I owe this to my daughter? How would knowing impact all of my life decisions? There is sooo much to think about…

    I would love to just hear your thoughts.

    A friend in similar situation,


    Comment by Heidi | July 7, 2010

  2. Heidi,

    I am so glad my musings here are helpful to you. The whole idea of keeping this blog is to show how this disease affects those who have to witness it’s horrific grip on a loved one — then go on living somehow after they die. It’s been my goal to be open and transparent from the start for everyone who stops to read this, even to those too scared to leave a comment. This disease affects survivors forever, it seems. We’re shaken by it for the rest of our days. It is my hope that people who are new to CJD find this blog and see that they don’t have to be silent and they don’t have to take this lying down. You can react, be mad, share your hurt, and ask questions of the many doctors and researchers involved today. If we don’t make a noise, this continues to be a rare and almost “secret” disease the general public has never heard of and will never be affected by.

    Heather Larson

    Comment by CureCJD_Heather Larson | July 24, 2010

  3. About testing, I’m in the same boat. I have yet to get tested. I called once to make an appointment but the thought scared me so much I hung up while on hold. I’m 30, single, never married and don’t have children. In the decision to date and possibly get married at some point, I’m only interested in dating men who either have kids already or who aren’t sure they ever want to have kids. Basically…I doubt I’ll ever have biological children. If I get tested and come back negative, that thought may change. I think often about adopting at some point, for a variety of reasons. (Mostly because my niece is adopted and adoption is a wonderful thing). I lean more towards adopting than having kids biologically, but I don’t want to leave young children behind if I die. I certainly wouldn’t want to leave a teenage child behind. I’d have to get pregnant right now to leave a child behind at age 25 — the same age I was when my mom died. So I think for right now I’ll enjoy life and see what happens. There are plenty of teenagers in this country who need to be adopted all the time, I’m sure that won’t change in the next 15 years, unless there’s some miracle that happens (for kids who need homes).

    I fear getting tested for finding out I’m positive for the gene marker. I fear getting tested because I fear the information won’t be kept private and I’ll be discriminated against somehow if I am positive. (Thought genetic discrimination is illegal, thanks to President Bush). I fear getting tested because I’m not sure what it will do to me mentally. Though I am quite sure I won’t run out and buy a motorrcyle and a Porsche, then backpack across Europe, bungee jump, and get a tattoo. 😉 I fear getting tested for finding out I’m negative and then having to deal with survivor’s guilt. My mom and uncle died, so why do I get to live? What if my cousins are positive? I don’t want to know if they are positive.

    But knowing it runs in the family means there are decisions I must make, positive or negative. I must live my life the best I can and find my happiness as best I can. As I get older, papers will be in order. The important conversations will take place. I have a lifetime to say goodbye to loved ones if need be.

    Heather Larson

    Comment by CureCJD_Heather Larson | July 24, 2010

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