Comments for Cure CJD

Comment on Follow me on Twitter @heatherlarson by ainee

ainee — Mon, 09 Nov 2009 00:45:04 +0000

Pre 1968, vets in Australia successfully used a treatment for a brain wasting disease PEM – Polioencephalomalacia – in livestock, which has similar symptoms to CJD in humans.

I wonder if doctors know of this treatment, which is also for human use.
ainee.

Comment on What a difference five years makes in the emotions of this by ainee

ainee — Mon, 09 Nov 2009 00:38:57 +0000

Pre 1968, vets in Australia used a treatment which was successfull in treating PEM – Polioencephalomalacia – a neurological illness in livestock – which has similar symptoms to CJD in humans.

I wonder if doctors know about this treatment, which is also for human use.
regards
ainee

Comment on What codon 129 does by Amanda

Amanda — Wed, 04 Nov 2009 18:25:36 +0000

This would be something that I would be interested in knowing when you find out.

Comment on Great article today from Edinburgh: A mother loses her son to vCJD by CureCJD_Heather Larson

CureCJD_Heather Larson — Tue, 03 Nov 2009 16:50:24 +0000

Absolutely!

Comment on Great article today from Edinburgh: A mother loses her son to vCJD by Familial CJD

Familial CJD — Sun, 01 Nov 2009 19:59:38 +0000

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 on Fox’s 24 Presents Good Example of CJD by CureCJD_Heather Larson

CureCJD_Heather Larson — Sat, 17 Oct 2009 02:38:35 +0000

I am not familiar with the Many Newton letter; but I’ve also been out of touch for a couple weeks trying to move and deal with some stuff. I am so sorry to hear about your grandfather. I recommend contacting Deanna Simpson at CJD Insight. The list of family members she has lost to CJD totally smokes mine…she’s also a nurse, so she knows her stuff. I’ve talked to her before and she’s just wonderful. Check out:

http://www.cjdinsight.org/

It’s understandable that your family is in a panic. Mine was too, in the beginning. I recommend giving yourselves some time and space to grieve before making a decision about going after test results. Results bring either more grief or survivor’s guilt, so there’s no easy way to deal with it. Of course, any of us can be hit by a bus crossing the street any day. Definitely DO make sure your affairs are in order, like wills and power of attorney. These are things we should all have done anyway.

I have personally not gotten tested because A) it’s expensive and B) I just don’t see the point. If I come back positive, there’s nothing I can to prevent or cure the disease. I’ve got an acceptable level of life insurance for my age and really no reason to have a will as I don’t own property or have children. I’m still young, so this will change over time. I’ll up the life insurance and make sure my papers are in order. I always think ‘I’d love to get the test done to find out I’m negative!’ But if it’s positive, I don’t think my father would want to know and it wouldn’t be fair to have that hanging over his head. Who would want to know their child is destined to go the same way their wife went? The odds are 50/50 that I am positive. I think there is a peace in not knowing and in not letting it get to me. But that’s just me five years after my mom’s death.

Comment on Fox’s 24 Presents Good Example of CJD by Stephanie Guillot

Stephanie Guillot — Fri, 16 Oct 2009 14:20:08 +0000

I am trying to contact Mandy Newton to discus the letter that she wrote about her Father. My Grandfather just passed away from genetic cjd about a month ago and I am trying to figure out if all of the family needs to be tested for this disease. Can someone give me some insight into genetic cjd? The dr. thought it was vcjd until the autopsy just came back yesterday and now the family is a little panicy!!

Comment on Just shut down the other site, CURECJD.org. by Sieg

Sieg — Fri, 02 Oct 2009 06:55:43 +0000

I’m a person potentially suffering from early onset vCJD judging by how my symptomacy and pathology only really fits how it causes unbridled, random depression with no psychiatric cause. 19. If I die, it’ll be the most retardedly unfair death plausible.

Still? I think you should get tested. You need that extra relief on your shoulders. If you have a longer life ahead of you, you can plan for perhaps a neurochemist course and see about curing it yourself in the long term.

Comment on Follow me on Twitter @heatherlarson by CureCJD_Heather Larson

CureCJD_Heather Larson — Fri, 03 Jul 2009 18:03:30 +0000

Hi Valerie,

I can’t wait to see your blog once it’s set up! Thanks for finding the blog and commenting. It is so great to see a neurologist and prion researcher with an online presence on blogs and twitter. I am looking forward to all your contributions, both on and offline. I did mean 14-3-3. I must have written in a rush, which is usually how this blog happens.

Comment on Does lack of copper trigger CJD? by CureCJD_Heather Larson

CureCJD_Heather Larson — Tue, 30 Jun 2009 21:25:56 +0000

Hi Dr. Sanchez,

I did see you were on the list of participants for the CJD Family Conference in DC this year. I won’t be able to make it, but would love to meet up with you the next time you’re in the area. It would be interesting to get the Mexican perspective on CJD and see what is happening with it in your country. What is gCJD? I’ve heard of sCJD, iCJD, vCJD, nvCJD, and probably a couple others aside from obviously fCJD, but what is gCJD?

Heather Larson