Cure CJD

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

Great article today from Edinburgh: A mother loses her son to vCJD

There is nothing that I think is more important–and more difficult–about CJD to convey than what it is like to watch a person’s body endure the suffering caused by this disease.  This article does a really great job of showing how a young man went from healthy to helpless in mere months.  This is why the disease must be taken seriously and not be the butt of jokes on shows like “The Simpsons.”

Seeing this happen to a human body has given plenty of us long-lasting PTSD symptoms.  You can’t watch a person go through this range of neurological symptoms and not have your perspective on life forever changed.  I know, even five years after my mother’s death, that there are some things I’ve seen that I will never get out of my head.

This one portion of the article really stands out for me and talks about Kate Madden’s son, Alan:

“Later he’s pictured in a wheelchair and lying in a hospital bed with padded sides to stop him smacking his face against the metal frame as his body was wracked by uncontrollable jerks. He’s blind and he’s mute, he’s lost control of his bodily functions and he’s dying.”

Imagine losing control of your bladder and being unable to swallow.  Imagine experiencing non-stop jerky muscle movements and seizures.  Imagine being completely unable to walk or even hold a glass to your lips.  Imagine this happening to someone you love.  You mother, sister, husband, grandparent, or worse–your own child.

My heart goes out to the Madden family and all families affected by CJD.


October 31, 2009 - Posted by | Uncategorized | , , , ,


  1. Hi Heather,
    I have a few questions for you that I would like to ask in private if you do not mind. E200K mutation. Could you email me when you have a chance?
    Thank You

    Comment by Familial CJD | November 1, 2009

  2. Absolutely!

    Comment by CureCJD_Heather Larson | November 3, 2009

  3. mi madre tiene ecj es algo muy malo tiene mioclonias y ya no puede caminar cualquier informacion sobre algo que alivie esta enfermedad sera agradecido, Andres

    Comment by Andres Paez | December 16, 2009

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: