A powerful e-patient story – parents search for what ails their son

From SPM member Gangadhar Sulkunte:

This article is very powerful. How the parents had to go through genomic hell to track down which genetic ailment was killing their son. Lots of useful information on genetic disorders, gene mutations here:

http://matt.might.net/articles/my-sons-killer/

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Posted in: e-patient stories | found on the net

 

 

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2 Responses to “A powerful e-patient story – parents search for what ails their son”

  1. Susannah Fox says:

    Yes! The Might family’s story is amazing. I’ve been following Bertrand (really, his parents) on Twitter since I began fieldwork among people living with rare disease:

    https://twitter.com/#!/bertrandmight

    Here’s the report which resulted from that fieldwork:

    Peer-to-Peer Healthcare
    http://www.pewinternet.org/Reports/2011/P2PHealthcare.aspx

    I don’t see the comments attached to the post that are mentioned in their tweets, tho. Maybe they deleted them, since some were vicious:

    “.@mattmight wrote about B’s medical journey. Commenters suggested euthanasia for B & accused us of “pure egocentrism” for having V. #ImUpset”

    V refers to their second child, a daughter, who is genetically typical but had a 1 in 4 chance of inheriting the same challenges that Bertrand faces.

    This backlash or blame is something that comes up pretty often when I talk with people about the research we’ve done looking at people living with rare disease. To them I say, “You should meet Laurie & Catherine & Nell…” (and I could go on…) People living with rare disease (and the people who love them) have so much to teach us. We just need to listen and be ready to hear it.

    Examples:

    Mama Birds
    http://e-patients.net/archives/2012/03/mama-birds-catherine-fairchild-calhoun-and-laurie-strongin.html

    The impact of the internet on one man’s life
    http://e-patients.net/archives/2012/03/the-impact-of-the-internet-on-one-mans-life.html

    Uncommon Challenges, Shared Journeys
    http://press.sireninteractive.com/

    The Spirit Catches You and You Fall Down
    http://us.macmillan.com/thespiritcatchesyouandyoufalldown/AnneFadiman

  2. Susannah Fox says:

    OK, I found the comments – on Gizmodo’s version:

    http://gizmodo.com/5914305/hunting-down-my-sons-killer

    Scan them – they are worth a read if you’re interested in how people view science, ethics, and the history of both.

    I loved this one:

    “As a Med Student, this reminded me why we have to learn all of this ridiculous detail. Fantastic story.”

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