ANNOUNCEMENT: New Marfan Syndrome Support Group Web Site

Discussion in 'Optometry Archives' started by Michael Newman, Nov 26, 2003.

  1. Cross-Post To All Marfan Lists: (I apologize, cross-posts are
    obnoxious, but sometimes the most effective)

    I have created a new online support web site for people effected by
    Marfan syndrome. IT is located at: . The
    intent of the website is not to supplant any existing site, but to
    enhance the effectiveness of all Marfan resources on the web by acting
    as a highly publicized portal, or hub, for anyone looking for
    information about Marfan. The new web
    site brings something new to the Marfan community: it is an
    interactive site, you can post your thoughts, add your web links and
    share your experience with the rest of the world. Please visit the
    site, register for free, and help others to help themselves through
    new knowledge.

    Mike Newman - Webmaster,

    An oft-quoted cliché is that Knowledge Is Power, but the funny thing
    about clichés is that they usually contain some grain of truth. In the
    case of people who are diagnosed with Marfan syndrome, knowledge is
    more than power; it might be the key to saving a life--it is what you
    don't know about Marfan that will kill you.

    I was diagnosed with Marfan syndrome in 1996, at the age of 20, and
    only recently have really made any serious attempts to come to terms
    with what Marfan is and learn about just how much of my life is
    dictated by this condition. Sure, I've been under a treatment regime
    of beta-blockers since my initial diagnosis, but really wasn't
    interested in the details and hadn't been getting regular checkups or
    echos--many people would correctly identify my behavior as denial. But
    we can't live in the dark forever, and the light came on for me about
    18 months ago when my kids' cardiologist wouldn't let me leave the
    clinic without scheduling my own appointment. He pointed out that I
    was taking every precaution for my kids except one, making sure that I
    live long enough to remain their father.

    Since that day, I've been much better about caring for myself, and
    frequently research Marfan syndrome on the web and regularly troll the
    Marfan newsgroups to see how other people are dealing with this
    condition. What I seem to have missed is a central place where I can
    find info about Marfan and share my knowledge and experiences as well,
    a place to give and take…. So, I built one.

    Please visit and become a member of the
    community by registering for free. I can't maintain the site alone; an
    interactive web site will only flourish if people actively use it.
    Otherwise it just becomes one more stale site with links to other
    stale sites, forever looping into infinity. But if you take part, and
    others take part it can be something great: a virtual meeting place
    where people of diverse opinion and experience can enlighten and
    enhance each others' lives.

    Please help spread the word about this new site to other people who
    are effected by Marfan syndrome, whether they are patients, loved
    ones, or medical professionals.

    Mike Newman - Webmaster,
    Michael Newman, Nov 26, 2003
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