BSE Found In Canada

Shocker.

Here’s the latest news today from The Guardian.

I know I shouldn’t post about it or care. After all, with three deaths in my family and one autopsy from Case Western showing my mother’s case to be E200K mutation…why care? It’s genetic for us no matter what. I can’t exactly point to my mother eating infected beef as the cause of her disease and death. I can point to our DNA, our cultural background, and the fact that this woman didn’t take care of health in all the time I knew her.

It’s nice of the Canadian government to release this news. I will forever wonder how many of these cases are not caught. Until every cow meant for human consumption is tested, I will push for every cow meant for human consumption to be tested for BSE. Why? Because there are so many innocent people in this world and no known clinical diagnosis or cure for prion disease in cows or humans.

I have learned to care more about the cure for humans in the past decade than I do about BSE in cows. My chances at living longer than another 20 years are still, to this day, 50/50 as far as we know. Of all ways I can die, I do not want to die like this. I have witnessed this hell firsthand. No human being deserves this.

So let’s test all the cows until there’s a cure. Then we can put this to bed.

I pray I live to see that day.

Thank you for your emails about CJD

I have received two separate emails from CJD families in different foreign countries this weekend. Each person is asking me to tell them about treatment options for a suspected case of CJD. At first, I was confused and wondering who is giving people the idea that there is a treatment.

Then I realized that we all go to the hospital expecting swift diagnosis, treatment, and a cure for illness. I really want to see the day we live up to our own human expectations. I’m happy to be a small part of it.

With that said, I will now struggle to answer each email. It never gets any easier. I know someday it will because some day I will be able to give them the answer they want. Of course, if that were really true, people won’t be emailing me at all. That is the goal. Someday, we will have a clinical diagnosis, a treatment, and a cure.

Right now, we don’t.

As it always goes, I will email these nice people and answer their questions. I am sure they won’t email me back ever because that’s usually how it goes. Sometimes a miracle happens and a patient is diagnosed with something other than CJD and that is when I get a return email at some later date, which is nice. I am always happy to hear there is one less case of CJD. I wish there were no more cases of CJD. Until then…

I regret to inform you there is no clinical diagnosis of this disease. The only definitive diagnosis comes from autopsy. I also regret to inform you there is no treatment. There is nothing to treat or cure. Not right now. I have heard there may be a drug for humans in 3-5 years, but I wouldn’t get excited yet because medical progress is slow.

Other families have told me they have used drugs to make the person with the suspected case of CJD comfortable. In my experience, this was not possible. There was nothing we could do to make my mother comfortable. However, the course of disease in my family is extremely quick. My mother and uncle died at about the one-month mark. Those of you who do not share my family’s specific E200K mutation will unfortunately find the course of disease may last for months.

I can’t imagine how hard that must be. I’m being completely candid here; I reached my breaking point the morning of the day my mother died. I don’t think caregivers get nearly the credit and support they need. But that will be another post on another day. Today, there are emails to return.

~Heather Larson

On Twitter: @heatherlarson

hotwords (at) mac (dot) com

Started a CURECJD Tumblr account

In an effort to always be trying to reach a new audience in order to educate others about the horrendous disease CJD, I started a Tumblr account about it.

You can access it here as — of course — CURECJD.tumblr.com.

I think there are people who read lengthy blogs and then there are those who watch videos and digest smaller amounts of info…Tumblr is for that latter group. So the Tumblr account may be a more abbreviated version of this blog plus whatever reblogs I can come up with after I discover someone posts something on Tumblr worthy of reblogging…

Social media is just another useful tool in fighting the good fight. If you’re on Tumblr, please track the tag “CJD” on your dashboard and reblog the good stuff you can find. You never know who you end up reaching and how you can make them start to think about CJD.

You can follow me on Twitter @heatherlarson

Today marks five years since my mother’s death.

It feels like so much more than just five years have passed.  I think I look older than 30.  I definitely feel older than 30.  Yesterday, my mother would have turned 61.  It was a harder day than I thought it would be.  As each anniversary has passed, I have never been able to anticipate how I’d react.  Perhaps if I’d built something more than just a blog, I’d feel like a better activist, like I’d accomplished something in the face of CJD.  But in the first five years, that was not for me.  This experience five years ago was so bad for me that I’ve only begun to really heal.  When a second death followed in our family last year as my uncle passed, the second blow was dealt.  I never thought another family member would go so soon.  We truly are not blessed with time in this E200K family.

I realize how lucky we are that there is no doubt their deaths were genetic.  We don’t have to live with the guilt other families do thinking it was something they did environmentally or something they ate. We have my mother’s autopsy results; there are no mysteries.  But, on the other hand, we live with the genetic threat.  Having a time bomb ticking in our veins is probably worse than wondering if it was a meal we had in 1986 when the world was pretty ignorant to this…

Each day I wrestle with bizarre thoughts about getting tested, not getting tested, what triggered it in my mother, how I can prevent it in myself…which of us will go next.  I wonder why my mother’s father is still alive at this age.  I wonder why we were so ignorant when we were told his brother had died of “mad cow disease.”  I wonder what year it will be when we solve the prion disease puzzles that baffle us. I wonder if my generation will grow to be old before it hits us, like my grandfather’s generation.  Or will we be like my mother and uncle and go in our 50s?  Will we all be so lucky as to be negative for the marker?  I wonder if something I know or have witnessed in all this is some doctor’s answer to finding the cure.  I wonder if I should adopt instead of having biological children.  I wonder if it’s fair to die and leave children behind; at least I’m 30, so any time after this if I have kids, I would be leaving adult children behind.  These are the things I think about.  This is my life.

I’d be remiss if I didn’t say that there are days when I don’t think about it at all.

CJD is a lens through which I’ve seen life differently.  This has taught me many life lessons that I wanted to or was prepared to learn in my 20s.  I know I have a deeper, more intense focus on life than others do because of it.

So that’s five years.  This is where I’m at.  I’m taking some time to relax as this year ends since I’m off from Boston University right now.  It’s my first real break in a long time.  Usually I have two jobs plus school going at once.  It’s nice to be able to have school off my plate.  I have one final class in January before I graduate.  One of my promises to my mother as she lay dying was that I was going to finish my college degree.  In 2010, with my bachelor’s degree finally complete, I can focus on other things, like doing my part for the cause of curing CJD.  For now, I will just continue to blog and raise awareness.

The story of my mother, of our family, has touched one life at a time.  CJD doesn’t get nearly as much press as the sexier diseases like cancer.  People still associate it with b.s. like it’s an old person’s disease or that it is rare, or that it can’t happen to their family.  People think it’s still something only a few hundred people a year die from, so it’s not that important.  Well, if those 300+ people who died this year aren’t important to you, well, I can’t help what kind of person you are.  But that’s 1,500 people (at least) in the U.S. who have died, including my mother and uncle, since five years ago began on this day in 2004.

Those 1,500 lives lost matter to me.  They matter to us all.

RIP Phyllis Larson, November 9, 1948-November 10, 2004.