Katharine Moser’s Personal Story About Testing Positive for Huntington’s Disease

Deliver Flowers of Charming DaffodilsThis Sunday’s New York Times article about genetic testing for Huntington’s disease made me cry. It features Katharine Moser, who tested positive for the huntingtin gene, and tells her family’s experience with the disease. Katharine’s friends, Colleen and and Chris Elio, are amazing people too and have offered to take care of her once she develops symptoms. If you’re curious to know what it’s like to have a gene that 100% guarantees you’ll have a debilitating and deadly disease during what is normally a person’s most productive years, don’t miss this article and accompanying videos.

In fact, all of us will eventually know more about our future risk of disease than we ever anticipated once the genome revolution brings personalized medicine to our front door. Will you open the door like Katharine Moser? Or will you slam it shut and go hide under the covers?

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    • http://www.diabetesnotes.com Kendra

      Wow, thanks for the cry. This will become a very hot topic in the next few years. Should we know our fate, or just go along for the ride? I don’t know what I would do, but I applaud her for having the courage to do what she wanted to do. I would assume that she will live her life to the fullest, not as reserved. Genetic research has come a long way!!!

    • http://geneticsandhealth.com Hsien Hsien Lei, PhD

      Kendra: (((hugs))) I thought Katharine Moser was so impressive. She’s going about living a normal, happy, productive, helpful life. Few of us can say that even without the knowledge she has of her future.

    • Naina Marbus

      Lei:

      The NYTimes article mentions that the disease is caused by a gene on chromosome 4, where there are more than 35 C-A-G repeats in a row, in people who develop Huntington’s…that this DNA hiccup causes cell death in the brain.

      I wonder if any genetics researchers are attempting to use RNAinterference to suppress this hiccup? They can possibly come up with a solution so that Katharine Moser can escape the ravages of the disease?

    • XXH

      IF Katharine Moser Could Hear Our Voice

      I would say that I got nothing to pity on her, all of us are living with risks, but I wanna do what I can do to make her life more meaningful and happier. And I know the first thing we can do at least is to get more people’s attention to this disease, let it known by the society.

    • http://geneticsandhealth.com Hsien Hsien Lei, PhD

      Naina: There’s information about gene therapy using RNA interference to treat Huntington’s at HOPES: Huntington’s Outreach Project for Education at Stanford.

      XXH: Yup. I don’t think Katharine wants our pity at all. But I agree that the less the disease is seen as something to be ashamed of, the sooner we can bring about a cure.

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