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where did hcm come from in my familyand how far it goes back

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  • where did hcm come from in my familyand how far it goes back

    I was wondering if I'll ever figure out for sure where the hcm came from in my family, it's been running strong, my dad had it and died at 30 and I have it and I have chf and atrail fib to go with it, my son died at 6yrs from sd and my daughter got a abnormal ekg and thats all I know besides my grandma had some sort of heart disease, but I got no name to go with it ( my dads mom) and my aunt max was diagnosed a few years back then turned around and said she was missed diagnosed although she had poss. symtoms, then later her son my cousin died suddenly at 40yrs from a heart attack they said from eating to much mc'ds, I think that sounds wrong
    I was next to kin when my grandmother died and I had power of atterney can I get her records from when she was living 10 years back so I can figure out the name of her disease, hcm or not?
    Also my dad's side of the family seems to shun this hcm thing like they are to good to have this problem, my aunt more so.
    Jen

  • #2
    Re: where did hcm come from in my familyand how far it goes

    Hi

    You can get the records but it may take a long time and since they didn't call it HCM, it probably won't be definitive even if you got them.

    Your best bet is to make sure you and yours get the best treatment and it sounds like you should have an ICD if you don't already have one.

    Take care,

    S

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    • #3
      Re: where did hcm come from in my familyand how far it goes

      In my family as far back as i have gotten was my grandmother on my fathers side an Aunt, 2 uncles, a brother a neice a great neice my son and myself, we figure my father is the carrier but doesn't have the disease, it has to be my father because my half brother and i have different mothers but same father and he died from the disease, we all thought until i got it it was from my brothers moms side but being i have it it has to be our fathers side of the family

      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

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      • #4
        Re: where did hcm come from in my familyand how far it goes

        Hi,

        Something that was helpful for getting information about my husband's health was getting a copy of his dad's death certificate (his dad died when he was 5). The cause of death was from acute cardiac failure due to "HYPERTROPHY". An autopsy was performed which showed thickening in the heart. This was a key in finding out where my husband ended up with HOCM.

        Paula

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