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Rachelle Mother of Dylan, 15 and Zach, 13. Dylan recently diagnosed with HCM. Find out more about Rachelle
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  • Gene Therapy

    I'm currently involved in a study to hopefully determine my gene for HCM. I'll immediately have my children, ages 3 and 5, tested to see if they carry the same gene. My question is, if they've inherited my gene for HCM is gene therapy an option to cure the disease? I know gene therapy is very new and I know it must be performed before symptoms of the disease are present. I'm looking for any direction on who to contact or information from anyone who has any information on this. Thank you!

  • #2
    Re: Gene Therapy

    dear rachelle,

    there isn't any gene therapy yet. HCM is really complicated. there are about ten mutations that cause it and then a hundred variations on those.

    it may be a long time before we see any gene therapy. but your kids are young, so they may still have a shot at it someday.

    take care,

    s

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    • #3
      Re: Gene Therapy

      ditto to what Sarah said.

      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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      • #4
        Re: Gene Therapy

        Hey Lisa what are u talking about gene therapy is do available gene therapy is the insertion, alteration, or removal of genes within an individual's cells and biological tissues to treat disease. It is a technique for correcting defective genes that are responsible for disease development. The most common form of gene therapy involves the insertion of functional genes into an unspecified genomic location in order to replace a mutated gene, but other forms involve directly correcting the mutation or modifying normal gene that enables a viral infection. Although the technology is still in its infancy, it has been used with some success.
        Corona physical therapy

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        • #5
          Re: Gene Therapy

          Deon, that's just not the case. There are almost no viable gene therapy treatments for HCM, and there is none for HCM.

          Gordon
          Myectomy on Feb. 5, 2007.

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