If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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About the Author

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RPMelia RICHARD P. MELIA, Ph.D. I retired May 3, 2006, as Director, Division of Research Sciences, National Institute on Disability and Rehabilitation Research. I worked for the Federal government on disability and rehabilitation research, training, and policy for 36 years. I'm originally from Newton, MA, just outside Boston. I majored in political science at Northeastern University and completed MA and Ph.D. degrees from UMass Amherst with an emphasis in public administration and public health. I'm pleased that I helped shape many interdisciplinary, interagency, international, and intergovernmental activities and research initiatives in rehabilitation, independent living, and disability policy. Currently I'm an independent research consultant and listed on LinkedIn. I'm a Board Member of the Hypertrophic Cardiomyopathy Association and a Member of the Board of Directors (and Chair, Supervisory Committee) of the Queen of Peace Arlington Federal Credit Union. I advocate for the CIFIDS Association of America, the Genetic Alliance, on Disability in Prison Issues for CURE, and for the American Heart Association’s Heart and Stroke Research Coalition. I am a former At-Large Member of the Board of Trustees of the Hearing Loss Association of America, My plans include assisting planning, research, advocacy and awareness efforts for national, regional and local disability and health organizations, social justice groups and credit unions. I also plan to help my wife, Eileen, with her Affirmation Quilts Ministry. I'm interested in independent living programs, programs for deaf and hard of hearing individuals, services for persons for persons with severe disabilities, legal protections for persons with disabilities, disability management at the workplace, transition from school to work, supported employment. Research: performance and outcome measures, strategic planning, human subjects’ protections, program reviews, research methods, and knowledge translation programs. Find out more about RPMelia
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  • Google Alerts

    Hi

    I'm a newbie posting for the first time. I live in Northern Virginia. I work for the Federal Government as a disability and rehabilitation research manager. I was diagnosed with HCM a year ago just as I turned 60.
    My diagnosis came after I nearly passed out at my son's grad school graduation; fortunately that resulted in immediate treatment at a first aid station and first rate care by an HCM specialist cardiologist at a major research hospital. After a night in a cardiac telemetry unit I had an echo-stress cardiogram resulting in ID of HCM. I currently use a beta-blocker and have been doing well keeping track of my BP and using a heart monitor for exercise.

    Does anyone else use Google Alerts? I've found them to be a great source of information - including how I learned of HCMA. See below.

    RPMelia

    Here is an example of the alert I received today:

    HEART enlargement is a common cause of sudden death in young ...
    Innovations-Report - Germany
    A seminar in this week's issue of THE LANCET highlights the frequency,
    diagnosis and management of hypertrophic cardiomyopathy, an unexplained
    thickening of ...
    <http://www.innovations-report.com/html/reports/medicine_health/report-29855.html>

    ONE in 500 people has 'sudden death' heart condition
    Independent - London,England,UK
    ... The condition, hypertrophic cardiomyopathy, causes the thickening of
    the heart wall and has been blamed for the deaths of several well-known
    athletes. ...
    <http://news.independent.co.uk/uk/health_medical/story.jsp?story=528012>

    This daily-once Web Alert is brought to you by Google...
    - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

    Try Google News Alerts:
    http://www.google.com/newsalerts

  • #2
    Re: Google Alerts

    Hi and welcome. I haven't used the Google alerts, but think it's a good idea. I hope you learn a lot with us. Are you going to Bethesda? I was going to go there myself when I lived in Fauquier County but decided to wait on my treatment. (I don't have HCM, I had another condition. My husband has HCM.) I hope to see you here a lot!

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Re: Google Alerts

      Hi RP,
      I guess I’m getting to be one of the welcome wagons that circle around trying to make people feel comfortable and welcome at this site. You’ll find we are a friendly and supportive group with people who have faced just about every aspect of HCM at one time or another. They can not only give you the facts about things, but you can also discuss matters with people who have faced what you are facing now, and give you the scoop on what it was like for them. Also, there’s a ton of information here, both at the front of the site, and in the postings, which can be scanned by using the ‘search’ function at the top of the pages.

      I find google to be a handy dandy little tool which I use almost daily. (I can’t figure out how I got along without it,) but for HCM related information – this is the place.

      I’d like to give you a thumbnail sketch of my background, but it’s approaching midnight and I still have lots to do before facing a long drive tomorrow. I’ll just say good night for now and hope to see you posting again.
      Burt

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