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Our community is GROWING!!


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Lisa Salberg Find out more about Lisa Salberg
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  • Our community is GROWING!!

    Hi everyone,
    I know many of you stop by and read but do not register, but boy are we gaining uses at a record pace! In the past 2 months we are averaging about 100 new users per month! To those who have been part of the community for a long time I have to thank you all for your continued contributions and to those new to the site -we are happy to have you hear and look forward to getting to know you all a bit better.

    Take care everyone!!
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Re: Our community is GROWING!!

    Awesome! Kudos to you Lisa for having the courage, faith and stamina to get this board going. I know it has changed and helped many people

    Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
    ICD&Pacemaker 1996
    Heart transplant March 19, 2004 @ Mayo Rochester
    Mom of Kaye.


    • #3
      Re: Our community is GROWING!!

      Wonderful news!

      God Squad co-moderator
      Nothing is as gentle as strength and nothing is as strong as gentleness


      • #4
        Re: Our community is GROWING!!

        Ditto to what Midge said.

        Lisa saved my life.

        Lisa was the start, Dr. Lever and Dr. Smedira and The CCF did the rest.
        And for that I am eternally grateful.
        49 yrs. old
        Diagnosed at 31.
        Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
        First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
        Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
        Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
        My brother passed away suddenly at 34 yrs old from HCM.
        2 teenage children, ages 17 and 15.


        • #5
          Re: Our community is GROWING!!


          Everyone owes so much to you for started this and having a place to go and talk to others with HCM. Keep up the great job.
          Joe Del

          Diagnosed @ age 45 with HCM June 2004; ICD Implant: September 2004. Fifteen years prior was tested and told had an anxiety attack. Second ICD implanted May 5, 2009 with adding second lead.

          My biggest part is the depression and now on disability.

          Tested positive for HCM gene and all three children are negative.

          Husband and father of three children: Son 18 and two daughters 13 and 7.


          • #6
            Re: Our community is GROWING!!

            God bless you Lisa for having a vision. You have helped so many people and will continue to help many more!!


            • #7
              Re: Our community is GROWING!!

              Congrats to everyone responsible in creating and the ongoing success of this web site and the HCMA.
              A BIG THANK YOU to Lisa. She has helped so many people and has been a spokesperson for all of us.
              Hopefully our community will continue to grow to educate others.


              • #8
                Re: Our community is GROWING!!

                I just want to say it took everyone to get the sight to where it is today so everyone pat yourself on the back and a special thank you to Lisa for starting it in her sisters memory

                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


                • #9
                  Re: Our community is GROWING!!

                  Thanks to Lisa this site has new members! Thanks so much for everyone's advice and a big thanks to Lisa for her counselling!
                  son, Ben, age 11, diagnosed with HCM 02/2007


                  • #10
                    Re: Our community is GROWING!!

                    Originally posted by Lisa Salberg View Post
                    I know many of you stop by and read but do not register, but boy are we gaining uses at a record pace! In the past 2 months we are averaging about 100 new users per month!
                    Have you been giving out free cookies again without telling me???
                    "Some days you're the dog... some days you're the hydrant."


                    • #11
                      Re: Our community is GROWING!!

                      I am so Happy that this site is still going so strong.
                      Most days i have no energy ,but i do read the newsletters
                      when they come.
                      You All have made this a great place, Lisa, WOW did you ever
                      guess this would happen. Thank you for the dream.

                      Laura Johnson


                      • #12
                        Re: Our community is GROWING!!

                        I'm really proud of this site and and this association and everything that has been accomplished. I know we'll continue to grow as the word gets out. There are so many internet sites out there that have dubious information on them. Since the HCMA site has factual, non-sensationalized information I think that physicians as well as patients will come to see what we're all about. Keep up the good work.


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


                        • #13
                          Re: Our community is GROWING!!


                          Thank you, Lisa, for everything you do, and for starting the HCMA so that we can get information about this disease that we can't easily get anywhere else.

                          I think that your efforts are helping to get the word out!

                          I'm pretty sure that I read on here before that HCM affects more people than cystic fibrosis does. Yet it's incredible how few people, besides those affected with it, know about HCM.

                          Does the steady increase of members to this site mean that more people are getting diagnosed? Does it mean that the medical community is finally recognizing HCM? Or is the web making it easier for people to find information?

                          Whatever... I think it's terrific, and just want to say thanks again, Lisa.



                          • #14
                            Re: Our community is GROWING!!

                            thank you Lisa for what you do and you precious advices!