Cure CJD

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

How has CJD changed my life since it runs in my family?

I could probably answer this question all day long. It may take a while. This may require a few blog posts! In answer to reader Lori, I will begin to attempt to answer this question.


If you’ve found this blog and you’re reading this, then you already understand there’s a very tough thing we all must do. We all must accept CJD. It’s happening to someone you love or you wouldn’t be reading this. You have to accept that it is happening. That is hard.

To take it a step further, I have had to accept that this runs in my family. This can happen to more of my relatives than it has already happened to. My mom in 2004 dying of CJD was really just the tip of the iceberg.


But once you reach acceptance, you are able to make peace with it. You have to find a way to actually live with this possibility in your life. This is what I am trying to do each day.

How has this changed my life? 

It has changed me. It has changed the person I am and the outlook I have on life. In some ways, it has been for the better. I’ve lived a lot harder than I would have if I were just the average person my age who isn’t worrying about mortality yet. But there are drawbacks too. I’m not a planner. I don’t think years ahead. I don’t even think months ahead. I took my first real vacation in years just last year because I couldn’t bring myself to plan far enough ahead. Much of what I do is spontaneous, or I just go with the flow. This can be good or bad. I live in the moment but I am learning to plan ahead. Like I’m going to be here a while.

I also take some risks now and then. Why have fear when a I’ve accepted my possible mortality? (Again, I don’t know if I am positive or negative for the E200K gene). I’m tackling the bucket list. I got that tattoo. I took that vacation last year. I walked into a car lot one day and bought that brand new car. I bought that ridiculously expensive thing because I deserve it. There are days when I worry my DNA may be screwed. Those are the days for me when I have those extra shots of whiskey or go to that party when I’m tired and make that phone call to tell someone I love them. I have perspective.

Then there are days I know no one understands. I learned CJD ran in my family when I was 25 and single. I’m in my 30s now and single again. I am still at an age where people my age haven’t buried their parents. People my age haven’t talked about their wishes with their families. How does the life insurance money get divided? Who is my benefactor? What am I leaving behind to be cleaned up? In my home? Financially? Who can I trust with my affairs? This is the stuff I think about. Having a will. An advanced directive. I think if you’re my age, married, and with kids — you’ve thought about this stuff. You should have by now. I was thinking about it at 25.

A jaded perspective 

It’s hard to freak out over a lot of things now. I see people get worked up over a loved one’s medical care in a hospital and think to myself, “At least you have a diagnosis, treatment and quality of life! Stop complaining and just enjoy that you can still have a conversation with that person and they can tell you what’s wrong!” Care and treatment for CJD patients has a long way to go. I helped facilitate my mother’s autopsy between Arizona, New Mexico, and Case Western in Ohio. So don’t tell me you’re down in the dumps over _______. I’ve been through worse. It may sound harsh. And I do certainly feel a lot of empathy for what others go through. It’s just that I’ve had some experiences because of CJD that the “non-CJD” people can’t relate to at all. I try to explain and people give me blank looks. So that feeling of being understood by my peers often just isn’t there.

I’m different 

I have had to realize and accept that I am different. My circumstances in life are different than most people face. I’ve had to cut through the fluff to figure out what really matters to me in life just in case my time here is short. What is the absolute bare minimum I’d like to get done in my time here? What would I regret not doing? I have to make every day count! I don’t like to stay home sick from work.

What’s most important in life?

People! People are the most important aspect of life. Who are your people? Your friends, your family? Are you close to them? Are you at peace with your relationships with them? Are you leaving them money when you die? Are they your priority while you’re alive? Are you filling your life with people who enrich it or those who drain you of energy?

These are the questions I ask myself.


February 13, 2013 - Posted by | Uncategorized

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