Posted by: Chris Maloney | January 14, 2012

Kathleen Edwards, 9, Dies of Huntington’s Disease.

Progression of Huntington's Diesase. A microsc...

Image via Wikipedia

Kathleen Edwards is perhaps most famous for the fact that a neighborhood mom decided to cyber-bully her to get back at her grandmother.  What did the grandmother do? NOT invite the neighbor’s children to a birthday party.  I can imagine why the grandmother wouldn’t want those children at a birthday party.  Especially since mom was so in control of herself she built a coffin for the ill daughter and drove back and forth in front of her house honking the horn.  Some people are just not well.

But Kathleen Edwards had Huntington’s Disease,  a very feared disease in medical circles.  It’s considered a growth disease by pharmaceutical manufacturers who stand to make $246 million off sufferers in 2012.  (I repeat: some people are just not well.)

Wikipedia has a superb article on Huntington’s (or extremely medical and detailed) mentioning briefly Nancy Wexler, who became a geneticist and mapped the gene while wondering if she had the disease herself.

The wiki article is very optimistic about treatments, but the most recent Cochrane analysis says: “No intervention proved to have a consistent symptomatic control in HD.”  So closing that door opens another.

If we look at poor Kathleen, she likely had a juvenile variant of Huntington’s.  Her mother gave her that variant, dying herself three years before Kathleen.  That her mother died much later in life tells us that Huntington’s typically does not hit until later, usually between 35 and 44.

But if you look at the literature, cases as early as 2 and as late as 80 have been reported.  A graph of the onset shows that 20% had symptoms before 20 and another 20% didn’t get them until after 50.  If that is the case, then certainly the genetic aspects of the disease are not the only triggering factors.

Given the broad range of onset and grim prognosis, surely some researchers are exploring the effects of diet?  In mouse, rat, and fruit fly models of Huntington’s diet seems to make a difference. But the human studies we have to date involve things like “a high calorie drink” which does indeed help somewhat with late-stage weight loss.  Generally Huntington’s patients eat more calories and are still losing weight compared to controls.  As they lose weight, neurological symptoms also worsen.  The symptoms of Huntington’s can be attributed partially to oxidative damage within the body, and both COQ10 and Creatine have some effect on this process.

Personally if I had this in my familial line I would want to know exactly what the 80 year olds who finally showed symptoms were eating.  The fact that a few ounces of supplements might make a difference leads me to think that the literally tons of food we put into our bodies might affect the onset of Huntington’s disease.





  1. Hello – can you tell me what is the article that was linked to your comment about pharmaceuticals making $246 million off of Huntington’s sufferers? Do you still have the article? apparently the newspaper you linked it to doesn’t have the article posted anymore. thanks

  2. Wow, it looks like the Sun Journal not only pulled the article from their page, they even “lost it” from their archives. In fact, now my blog post is the only post I could find using that number. If I hadn’t pulled the link directly, I wouldn’t think it was possible to scrub something like this completely. Here’s the original link. Most newpapers have a pdf history as well as a digital one, and a local library should still have last year’s papers. Or, if you have four grand to spend on it, here’s the link to the six year projections to the worldwide “Huntington’s market” with all the major players named. If you check their websites or call their investor hotlines, I’m sure the initial estimates are conservative.

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