Cure CJD

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

What I’m Looking For

While I really do (oddly enough) enjoy sharing with you my innermost feelings about accepting my mortality and analyzing Fox’s 24, I started my CJD blogs and website with actual goals in mind.

I want to educate the public and raise awareness.

I guess this is my way of fighting for the mother who never quite understood what was killing her. Believe me, if it had killed me instead, she’d be the one sitting here blogging about CJD. This is my way of fighting for the woman who could never fight for herself. This is how I fight for my own and all subsequent generations of my family.

Charity.

I’d love to create my own charitable foundation, but I don’t have time this year. (I am not kidding; I have to graduate BU). I’d like to find a way to see that money gets to this cause I believe in so deeply–finding the cure for CJD. I think the CJD Foundation is great for all they do. They work directly with families who are new to this disease. I’m not new to it. In fact, I’m stuck with it more than the iCJD & sCJD families are. There’s no escape when fCJD runs in your family. If there were a “CJD Research Foundation,” I’d be all over it. I have heard some CJD Families have sent money to a Dr. Bastian…I suppose there are several independent researchers I could send cash to. I just have to find out who they are.

Facts.

Short of finding the cure for CJD, I’d at least like to find what triggers the disease. My mother’s uncle died of it at age 69; she and her brother died of it at 56. My mother and uncle’s father (my paternal grandfather, the brother of that dead uncle of theirs) is still alive! He has watched 2 out of 3 of his children die of CJD, lost one brother to it, but he is still alive. So while CJD was triggered in two of his kids at the same age, he is still alive. He is the only one (that we know of) who hasn’t triggered it. Not through accidents, stress, anesthesia, surgeries, etc. I want to know WHY. And then I want to make sure we all do whatever he did to avoid the trigger. Or does this skip a generation? Because then my cousins and I would be home-free! But their kids… See, there’s no escape from this.

Finding Others.

Having a blog and website up has really helped me to find others in my same or similar situations. Add in over the years the social networking of MySpace, Facebook, and Twitter, and the possibilities of being in touch with like minds are endless. I’ve found other E200K families. I will never forget the man with GSS running in his family who helped me with great advice about how to plan the rest of my life, hopes, dreams, and more. Others have walked this past path before us; we are not alone. I left the “past” in that sentence I accidentally wrote because I very much want all the questions to be answered and for this to be in the past.

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June 16, 2009 - Posted by | Uncategorized

3 Comments »

  1. This is the first website I ever found when I googled cjd so there is a good chance you already know about it, but just in case you don’t, there is a cjd foundation. http://www.cjdfoundation.org
    they have a conference every year for cjd families with speakers such as experts who are currently researching cjd and other prion diseases.
    my grandfather died in january of sCJD, and these people helped us get in touch with the centers for disease control which performed an autopsy for free. they had his body back to us in time for the funeral so the funeral director could correctly list his cause of death as CJD. He was 80 years old and the doctors kept writing it off as alzheimers even though it progressed too fast to be alzheimers. he was riding a bicycle around the block a week before he started getting sick! My dad and my aunt were on the phone with the people at the cjd foundation a lot before and after my grandfather’s death. If you didn’t already know about this foundation, I hope it helps you in your research. Good luck!

    Comment by melissa hawkins | June 30, 2009

  2. Hi Melissa,

    I am so sorry to hear about your grandfather. Glad you found the blog. Yes, I did know about the CJD Foundation and I’m glad they were able to help you out. So sad that your grandfather’s doctors seemed to insist he had Alzheimer’s Disease. Unfortunately, it’s more common than CJD and therefore such an easier point of reference. It’s also a disease doctors are too used to seeing. It does have a few things in common with CJD but does move much faster. I think in a way, it’s easier to deal with CJD when the death comes quicker. I really feel for friends with parents and grandparents suffering from Alzheimer’s because I know they’ll have to put up with the stress of it for years to come.

    I won’t be able to make the CJD Family conference this year. I always hope to go each year, but money has been to tight, this year especially. I wonder if I am alone in that or if there are many of us west coasters who are unable to make the trip. Maybe a west coast conference would be a good idea? Not sure where you’re located.

    Heather

    Comment by CureCJD_Heather Larson | June 30, 2009

  3. My Great Grandpa died in his 50’s from CJD. My grandma has no symptons. My uncle passed away last summer with the sudden symptoms. THe doctors had no idea what it was from until they did an autopsy and found out it was CJD. They said it wasn’t genetic… well. It is. My Aunt has 2 sons, a 23 year old and an 18 year old. The 18 year old started not being able to sleep, got blurred vision, couldn’t walk, got worse and worse. He just got tested and he has CJD. He is in ICU at the hospital this moment not doing well.
    I hope they can find a cure or just more information.

    Comment by A | May 20, 2011


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