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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Diane Tipton Find out more about Diane Tipton
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  • #1

    Question for Lisa

    Hi, Lisa,
    I have appreciated all of the advise and information presented by you through this website. It is a great source, and I am happy to have found it.

    Are there any chat groups on this site for older children, teens, and young adults to discuss their experiences with HCM related issues?

    My son was diagnosed with HCM ( and several other conditions) at age 14. He needs someone to talk to who understands. He is 16 now.

    Could you consider such a chat room if there is not one ?

    thank you,
    dtip
    dtip
    Tags: None
  • #2
    Re: Question for Lisa

    Hi -
    We are working on ideas to bring a kids/teens board to the site. CHat rooms are so hard to monitor and I feel that the HCMA should monitor the activities of such a place.
    Thanks for your feed back on the site!
    Lisa
    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)

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    • #3
      Re: Question for Lisa

      Diane,
      I know exactly what your son is going through. I was 12-13 when I got diagnosed with HCM and mycarditis in India. I also had transverse mylitis when I was 18 due to viral infection in my spinal cord. I was paralysed from chest down. Fortunately, I recovered and walked out of the hospital on my own feet after 21 days.
      Today I am 34 living a normal life with Masters in Elect. Eng. from an Ivy leage school. Coming from a remote town in India, to me it has been a fun journey.
      During these years there is a lot of energy with in a person, but HCM limits the expression of this energy. Once your son finds a good place to channel his energy with positive rewarding experiences, frustrations go away.
      Feel free to contact me through PM or email. If your son wants to talk to me, I will be glad to chat too.
      Good luck....
      Ketan Thanki

      Comment

      • #4
        Re: Question for Lisa

        thank you for your reply. It is so wonderful to hear from someone who understands what he is going through. I keep hoping he will find that area that he can learn to love and love to learn. So far he has not found it, but hopefully as he matures, he will.

        Your letter is an inspiration.

        Sincerely,
        Diane
        dtip

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