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

Announcement

Collapse
No announcement yet.

Support Groups

Collapse

About the Author

Collapse

Marlene Wilkinson Find out more about Marlene Wilkinson
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Support Groups

    Hello and Good Morning
    I was wondering if anyone knew of any type of support groups in the South Of Boston area for those of us with HCM? I would like to meet people of my own age that have HCM.
    If anyone knows of any such group...please let me know.
    Thank You
    Marlene

  • #2
    Re: Support Groups

    Hi Marlene,
    As far as I know, there is no place, anything like this place, anywhere near this place, – sooo, this must be the place.

    Have you considered the HCMA meeting in NJ?

    You might try talking to your doctor or local hospital to see if there are other HCM people in your area that you could contact and discuss things with, but I have to tell you that the chance of this happening is exceedingly small – especially with the new federal medical confidentiality regulations.

    About the best thing I could advise is to post here and ask if there are people in your area who would like to get together and compare notes. You’ve got a group of HCM people here, and you live in a populated area. You just might be able to start your own support group.

    My wife became an epileptic at the age of 45 and wanted to talk to others with her affliction. We found a support group (living in LA) that met monthly, but to tell the truth, after a few meetings we didn’t go anymore. After a few repetitions of the same stories, it became boring. It sounded like a great concept, but the reality proved otherwise.

    Why not post your picture, and talk to us here? We offer lots and lots of support.
    Burt

    Comment


    • #3
      Re: Support Groups

      Hi Marlene
      I recently searched the internet to find out information about HCM and I was directed to this site. The closest support group to me is in Rochester, MN (about 80 miles) and they hold their meetings during the day, I work during the day so it is not always possible for me to attend.
      I agree with Burt. If you cannot find a support group nearby, keep in contact here. It's not like talking person-to-person, but people that post here have so much experience. Talk about knowledge....Lisa is supurb. Should you have a question, post it. You'll be surprised how many people will give their opinions and share their experiences. Read the information that has been posted. Should you like more information, call Lisa.
      This is a great group of people and I am so happy to be able to be part of it.
      Esther

      Comment


      • #4
        Re: Support Groups

        Thank you Both for answering the post
        I will continue to look around to see what, if any, support groups are around my area.
        I'm 36 and I've had a "murmor" all my life, diagnosed at 17.
        With life's complications and such, as everyone here is well aware, things have started to change a bit.
        I've been into Tufts University Med. Ctr....to see Dr. Maron I really liked this clinic. Well, I had the echo done, and I had the Cardiac Stress done last Tuessday which was hard. I go back in this coming Tuesday to see Dr. Maron and to discus the rest of what will take place. He discussed with me after the echo, that a Difibrillator will most likely be in my close future. I will say this...I'm nervous. I will let you know come Tuesday what the verdic is.
        Thanks for the support!
        Marlene

        Comment


        • #5
          Re: Support Groups

          Just an FYI
          If there is a lag in my posts its not because I'm ignoring anyone.....I've been getting "Invalid Session" when I try to post a reply. I don't know why... I haven't figured it out yet....I wanted to let ya know in case some time goes by and I didn't get back to any replies.
          Marlene

          Comment


          • #6
            Re: Support Groups

            Hi Marlene
            I was born a "blue baby" and my mother was told to let me do whatever possible. I was told at the age of 16 that I had rhumatic fever (found out when I went to NIH that I never had it.....go figure!). I was diagnosed with HCM when I was 20 and had my first open heart surgery. I've had an ablation, pacemaker, many tests and in 2000 I had an ICD implant. It took me a week (after my 2nd open heart surgery & talking it over with my husband, doctors and my daughter) to finally decided to give the ok. The unknown is very frightening and it's natural to be scared. Over the 3 1/2 years that I've had the ICD it has never gone off. I have come to terms that if it goes off, it will probably save my life.
            You certainly will be included in my prayers for comfort to come to the correct decision. Remember, the journey with HCM is like a maze, there are new crossroads and decisions the minute you are diagnosed with it. Keep your chin up. One question.....does your doctor specialize in HCM?
            Please keep in touch and let us know how you progress.
            Esther

            Comment


            • #7
              Re: Support Groups

              This is the best suport group you will ever find I've been a part of it for over a year now and feel i have made some friends here, you are in good hands with Dr. Maron he is one of the best, if he says you need an ICD go for it, mine is my security blanket, and after a while you will forget it's there, I'm 10 years older than you and just recently had surgery, do your best to take care of yourself and do what the doc says and you will do fine, a good doctor will listen to you and then treat you, Hope this helps some

              Shirley
              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

              Comment

              Today's Birthdays

              Collapse

              Working...
              X