CJD Talk Has Begun

My name is Heather Larson, and I lost my mother to fCJD on November 10, 2005. It was the day after her 56th birthday and she had only been sick for a month and two days. There were signs before that month and two days, of course. She was acting strange, had vertigo and ataxia. We did not, however, know what ataxia was at the time. Actually, at the time, we thought she had Parkinson's Disease, early-onset Alzheimer's Disease or maybe Multiple Sclerosis. Never did we think she had a disease that was treatable or unmanageable. Never did we think she had a fatal illness...oh, how little we knew back then.

So I'm creating this blog to tell my mother's story, and my story as I live my life knowing that I, too, could succumb to what my mother died of--familial Creutzfeldt-Jakob Disease, or fCJD. fCJD is pretty rare, but what isn't is CJD in general, like sporadic CJD. Oh sure, various entities will tell you a mere one in one million people die of this disease, but that's not true! I will post as much as I can here about CJD and other prion diseases. My main objectives are as follows:

1. To spread the word that CJD is not a one-in-one-million occurance.
2. To stress that every cow meant for human consumption needs to be tested for BSE and that we need an entirely new system for selling beef in this country. If you're going to eat it--make sure it's safe! Know where that cow you're about to eat came from and what it was fed in its lifetime. Know how old it was when slaughtered. Safe beef needs to become a priority in America.
3. To provide a place where people can learn and exchange information.

I plan to cover current developments involving prion diseases worldwide. I've met many CJD families all over the world via CJD Voice, which is a support group for those of us who have endured watching a loved one die of CJD. The support group is great, but you have to have lost someone to be there. I want this blog to be public and open to any and every opinion. I don't care if the beef lobby reads this. I invite the beef lobby to read this! I think what I plan to post here will be the most interesting stuff you'll ever read because I find the truth is far more fascinating than fiction.

Follow me as I work to educate the medical professionals in my community about CJD under the umbrella of the CJD Foundation's Medical Education Project. I will also be attending the CJD Family Conference in July this summer, which is held yearly in Washington, D.C. I'll be talking about the latest news in the world of prion diseases--my world.

So join me, read, post and ask questions. If you get nothing else from coming here, I hope you gain one thing: never stop asking questions! Never stop asking your doctors, your government, your grocers...keep asking questions. Let people know you do care about issues related to prion diseases like CJD, FFI, GSS, and CWD. I'll be writing about them all right here.

And so it begins...