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JLloyd9 Find out more about JLloyd9
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  • Genetic Testing

    Hi all,

    I am a 39 yr old male diagnosed with HCM about a year ago. I have 4 young kids, all of them active with sports. I am thinking about getting the genetic screening. Does anyone have any recommendations for a place that does the screening?

    Are there people out there who don't recommend the testing for any particular reason? From my perspective, I'd like to know so that I can plan accordingly. For example, I have a son who plays hockey, baseball, and basketball. If he had the gene, I might try to get him to drop one and take up golf or something so that he has that to fall back on should he present with HCM later. Make sense?

    Thanks very much for any thoughts.

  • #2
    Re: Genetic Testing

    Please call the office. They can direct you to genetic screening places. The one issue with genetic screening, if they have knowledge that they are gene positive, It can be very difficult to get LIFE insurance, as you usually have to disclose any known issues. MEDICAL insurance is now easier with the passing of GINA, but it could at times be hard to get a good plan. Obamacare has also made it much easier as well. Its wise to curtail competitive and sudden burst activities - All three listed are in that category, but Hockey and Basketball are really not advised.
    As to should he play if Negative? thats a personal decision, If it was me, I'd curtail it to more casual activities. If he's positive? then, I'd stop the competitive activities, but allow him to participate in other ways - assistance coaching, eq mgr, stats, etc.
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

    Comment


    • #3
      Re: Genetic Testing

      Hi JLloyd9,

      I'm not close to the area, so I can't give any local recommendations, but I did recently go through genetic testing and am waiting to get the results back so my younger brother can see if he has the gene. I would say if you are wanting to plan ahead that it would be a good option to get tested. One reason that some people wait to get genetic testing is that if they turn up positive for the gene it disqualifies them from buying life insurance for themselves in the future because they are considered too high risk. Even though you can still get life insurance through an employer, for some people that can be a concern. I consider the life insurance aspect not as important as the peace of mind of knowing about the condition, but everyone's different. Hope that helps.

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      • #4
        Re: Genetic Testing

        Chei776 - good advice. Also, most employers (esp. the larger ones) allow you to add additional LIFE insurance so take advantage of it. AND ask if its portable. Most are, but the premiums are a bit higher - but not outrageous like COBRA.
        Marc
        Diagnosed @ 48
        Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
        Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
        AICD - Valentines Day '08, Spark Plug replaced 11/14
        After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
        Quietly going insane . . .

        Comment


        • #5
          Re: Genetic Testing

          Originally posted by JLloyd9 View Post
          Does anyone have any recommendations for a place that does the screening?
          Were you able to find a good place that you'd recommend for genetic testing? Was it covered by your insurance?
          I know I can personally just go to Brigham & Women's in Boston, but I want to give suggestions to my father, who lives in CT, as well as his brothers & sister who I know won't make the trip in to Boston. I will likely suggest that they call the HCMA office for guidance, but it might rest on me to facilitate everything, so the more information I can have at my disposal, the better!
          "Because it's better to love, whether you win or lose or die"

          Comment


          • #6
            Re: Genetic Testing

            Please call the office. Some have offered to limit the cost so all you pay is the deductible (or a $100 cap). Not sure whats available, but they might.
            Marc
            Diagnosed @ 48
            Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
            Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
            AICD - Valentines Day '08, Spark Plug replaced 11/14
            After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
            Quietly going insane . . .

            Comment

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