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  • #1

    support groups

    Does anyone know of any support groups for hcm\icd people in or around phoenix or Tucson AZ area?
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  • #2
    Re: support groups

    Have you asked your EP? They often know what resources are available. Online, you always have us!
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

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    • #3
      Re: support groups

      HCMA just started support group leader training in May of this year.I believe they were looking at 3 groups to start with, but I don't think Arizona was one. You can call the HCMA office and ask Kelly.... Otherwise, as Marc says, we are here for you.
      After years of symptoms:
      Officially Diagnosed HOCM 2006
      Myectomy 3/11/13 at non-COE
      Extended Myectomy 7/23/14
      At Mayo with Dr. Joseph Dearani

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      • #4
        Re: support groups

        Online has been a great resource! I find myself reading through discussions just glad to know I'm not alone. It would still be nice to be able to have the face to face. I'm defiantly a people person and it would be nice to get together with people who don't freak out when you stop climbing the stairs to catch your breath.

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        • #5
          Re: support groups

          Generally the HCMA has a national meeting every year.....It is both educational and social. I went this year in May and it was great to meet the moderators from this forum as well as Lisa and docs like Dr. Lever and Dr.Barry Marin, Dr Marty Marin and my soon to be surgeon Dr. Dearani. Also men and women from all over the country with the HCM issues.... So start saving some money for next year.....They also sometimes have partial scholarships available.
          It was in New Jersey every year, but they voted to start moving it around the country, so not sure where it will be in 2015.
          After years of symptoms:
          Officially Diagnosed HOCM 2006
          Myectomy 3/11/13 at non-COE
          Extended Myectomy 7/23/14
          At Mayo with Dr. Joseph Dearani

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          • #6
            'Looks like this thread hasn't had any activity in 2 years. Are there any updates on the support group leader training that HCMA was organizing in 2014? I'm interested in forming a support group in the San Francisco Bay Area.

            Cheers,
            Alan

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