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Question for Lisa


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Diane Tipton Find out more about Diane Tipton
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  • 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,

  • #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!
    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)


    • #3
      Re: Question for Lisa

      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


      • #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.



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