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  • Please Help

    [Please Help]

    Author: Robby (208.187.180.---)

    Date: 10-14-02 01:24

    Hello friends,

    A dear friend of mine was recently diagnosed with HCM and Aortic Stenosis. I am still doing my best to research and understand the disease and its treatments. I have found many excellent resources to help me learn. Nevertheless, I would like to just know the strait up stats on my friends chances. For instance, what is the average life expectancy? What can be done to help? And, what should I do to help and support?

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    [Re: Please Help]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-14-02 02:58

    Dear Robby,

    You are a great friend! Despite a lot of negative information out there, most HCMers live a full life expectancy --however, having HCM doesn't protect you from cancer or coronary artery disease or anything else, so your friend still needs to take care of her or himself --eat right, wear sunscreen, laugh alot, etc, etc.

    The absolute best thing your friend can do is to RUN, not walk to a specialist in HCM. It is a very complicated disease that can range in severety from no symptoms to needing a new heart. The research about HCM is growing every day and very few doctors really know the latest info. Treatments that were popular only a few years ago are now not even recommended for most people, for example. Only by seeing someone who studies and treats HCM every day --or just about--will ensure that she is getting the best and safest treatment available.

    If your friend calls the HCMA at 973-983-7429, she can talk to Lisa about finding the specialist that is right for her. We don't just post a list of names here as we like to get to know people and try and point them in the direction that will work best for them.

    There are a few doctors outside these centers, but for the most part, all of the HCM docs we recommend are at the Minneapolis Heart Clinic, the Mayo CLinic, the Cleveland Clinic, Tufts-New England Medical Center, and St. Lukes, NY.

    We do NOT recommend the National Institute of Health as they are research focused, not treatment oriented at all.

    Robby, the straight odds are that your friend will live a long and fruitful life, but in order to make sure that happens, they need to be with the right doctor.

    I hope she (or he) gets in touch with us. If they become a member, they get a newsletter on the latest research and the public awareness/education efforts and a book on HCM.

    take care,

    Sarah

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    [Re: Please Help]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 10-14-02 09:04

    Robby -

    Ditto to what Sarah said...

    Lisa

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    [Re: Please Help]

    Author: Robert Hartwell (144.195.62.---)

    Date: 10-14-02 09:20

    Robby,

    Be there for your friend and make sure they get the best care they can

    Bob

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    [Re: Please Help]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-14-02 16:49

    Robby ... what a true genuine friend you are! Please see if you can find an HCM specialist for your friend! I would suggest giving Lisa a ring, too! She can set your friend in the right direction. Oh yeah ... and most importantly, keep being there for your friend! I am witnessing that by just standing by a loved ones side in a supportive, positive fashion ... you can serve to be one of the best forms of medicines available! You have come to a place where you will learn all there is to know about HCM and in turn you can take this information and really educate your friend with true informative facts! I have found this site to be truly amazing! Wishing you and your friend well. ~ Erica
    NOTE: This is a post from the previous forum message board.

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