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  • Inherited or not?

    [Inherited or not?]

    Author: Robbyn (---.sympatico.ca)

    Date: 06-12-02 13:33

    I know of no one in my family that has had HCM. Although my grandmother always was told she had thickening of the heart. She was told this was from having Scarlett Fever when she was a child. The year would have been around 1910. Is it possible she in fact did have HCM - but was misdiagnosed? Or does Scarlett Fever cause a thickening of the heart? She eventually died form CHF - but lived till the ripe old age of 84.

    Thanks,

    Robbyn

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    [Re: Inherited or not?]

    Author: Glen (---.com)

    Date: 06-12-02 13:52

    Hi Robbyn again.

    My father was also diagnosed with a thickened heart, he passed at age 43, 32 years ago, I can remember he had shortness of breath, chest pain and could barley walk up some stairs, he was never officially diagnosed with HCM.

    My grandmother, his mother also died in her 30s from a heart problem.

    One of the things Dr. Wigle did was have me make up a family history listing of all my family, including my mother, grand parents, aunts, uncles, cousins for as far back as I could remember and what any of them died from, he then had it made into a family tree for my file.

    He said it was likely that both my grandmother and father had HCM.

    Speaking of Scarlett Fever, when I was first going to cardiologists to find out what was wrong with me, one suggested I must have had scarlett fever when I was young to have the reading they were seeing.

    I never had scarlett fever, but it seems to be a common assumption for HCM patients.

    Glen

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    [Re: Inherited or not?]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-12-02 19:17

    Dear Robbyn

    Most HCM patients live a full life expectancy and it is highly likely that your Grandma had HCM and not scarlet fever-induced heart damage. HCM that goes untreated can eventually cause CHF.

    Before HCM was really understood (well, better understood), it was considered due to damage from childhood diseases like rubella or scarlett fever or from too much exercise. I got the same thing when I was in high school (the 80s) from doctors --they all assumed that the hypertrophy was due to a disease and not genetics.

    take care,

    Sarah

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    [Re: Inherited or not?]

    Author: Robbyn (---.sympatico.ca)

    Date: 06-12-02 22:01

    Well that is good news - sort of I think. I couldn't help but wonder sometimes if I brought this upon myself. I haven't exactly been a perfect angel all my life. Although I am now. My Grandma had a very hard life as my grandfather had a stroke and was hospitalized for 17 years. She had to bring up her children by herself. And she managed quite well.

    Glen - Dr. Wigle sounds like he is a good doctor. Not one doctor I have seen has asked ANY questions about anyone in the family.

    Anyway for the first time in months I am starting to feel like I am taking control of my health and it feels good. This has been brought to you in part by the good people of this board.

    Thank you

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    [Re: Inherited or not?]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-12-02 23:13

    Dear Robbyn

    HCM is always genetic. You are not alone at all in your situation. Many people find that they have HCM and didn't think anyone else had it and then the whole family gets tested and there it is! If you have siblings, they should get screened if they haven't already. HCM can show up early or late in life so it is important to get screened every 5 years as an adult and 2 years as a kid.

    Even if it turns out that no one else has it, which is exceedingly rare, it is still genetic.

    Glad we could help,

    Sarah

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    [Re: Inherited or not?]

    Author: Martha (---.eonet.net)

    Date: 06-19-02 20:53

    I'm so glad you asked that question and good to hear the answers. I, too have

    wondered where this came from but after reading this board, I've realized my mom who lived to be 94 must have had HCM. I remember hearing her doctor talk about her heart being enlarged and thickened and she was never able to do much. NEVER. She would get so out of breath and complain that her chest hurt.. She took lanoxin, I think that's what it was, from about the age of 80 and even had to have a pacemaker. Wish there was some way of knowing but I guess it doesn't matter anymore. I've also wondered why this wasn't detected in me till now. I'm 55. hmmm.... lots to learn and consider.

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    [Re: Inherited or not?]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-19-02 23:33

    Dear Martha

    My mom, too, thinks her grandma (who lived to be 83) had it, but of course there is no way to definitively confirm that anymore. However, it does sound very, very likely that your mom had it. Most doctors look for a murmur, or funny sound, to diagnose heart problems, especially in young women who they usually assume have nothing wrong with them. However, most cases of HCM don't have a murmur at all, so it is easy to miss. Also, a lot of the symtpoms (tachycardia, fatigue, etc) can all be put down to stress, hormones, etc before someone thinks to check on the heart.

    hope that helps

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Inherited or not?]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-20-02 12:37

    This line of conversation proves a point I try to get accross very often

    HCM is compatable with "normal life" span - so to all you parents out there take notice of this information.

    Lisa
    NOTE: This is a post from the previous forum message board.

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