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  • DNA testing on deceased family member

    [DNA testing on deceased family member]

    Author: Cathy Hilley (---.41.cc.und.NoDak.edu)

    Date: 10-07-02 16:23

    Hello, everyone. I have been following the message board for a couple months now, and I appreciate very much the kindness, concern, helpfulness, and willingness to share such personal things with all of us. Thank you. My heart goes out to each of you who has lost someone to HCM, particularly to those of you who are left with the "if only" regrets about knowing about the disease.

    I have a question about DNA testing, and it's kind of far-fetched.

    In my family, my mother(now deceased), sister, son and I have HCM. My mother was diagnosed around 1971(age 53) (one of the first at Mayo) after 3 or 4 years of symptome, and being told it was all in her head. She had what she called "tizzies" - her heart would race (200 - 300 bpm) for long periods of time, and while this happened, she would lie very still on the bed until it passed. Mom & Dad lived on a farm 14 miles from a hospital. My dad took her to the ER a few times, but by the time they got there, it was over, and her EKG was NORMAL. Her disease progressed - she passed out a few times with cuts and bruises to show for it, had at least one stroke due to atrial fib, took lots of meds, had a pacemaker for 15 years, and passed away last March at age 84. I was screened in '72 or '73, and was told I had the disease, but did not have symptoms (dizziness on exhertion) until 1986, when I started taking Verapamil. My EKG is normal, my echo very near normal. My sister did not get screened early on, but started having symptoms in 1984 (age 44). She had severe obstruction, a myectomy in 1997, a stroke due to atrial fib a few years before that, has upper & lower pacing, takes amiodarone, verapamil, coumadin and a number of other blood pressure drugs, and recently had a bout of CHF, atrial fib, and needed a cardioversion for that.

    I had my children screened in 1997; so far, my daughter is clear, and my son has the disease. My son's echo is very near normal. He started taking Inderol when he was diagnosed. My son, now 19, is a unique case, because he has cerebral palsey, is quadreplegic, and cannot talk. So, on the one hand, he won't be engaging in any high-intensity sports, but, on the other, he can't tell anybody if he feels his heart racing.

    So, here is my question about DNA testing. And it is about my brother. He died 38 years ago, 1964, at age 17. He supposedly drowned. My mother, father, brother and I went to a local spring-fed pond for some family fun. My brother jumped in, and almost immediately was in trouble. My mother, the good swimmer in the family, swam to him right away, had his hand, but could not pull him in - he wasn't fighting, wasn't helping, was just dead weight. From the way it happened, we figure something must have incapacitated him - a cramp,maybe - but we never dreamed heart failure. At the time we had no reason for an autopsy - Mom didn't have symptoms yet, the disease itself had barely been identified.

    I am concerned, for me and my family, that his death may have been a sudden death due to HCM, putting my son and me in a higher-risk category - my sister is already at high risk, in my opinion. If we did DNA testing, and we found he had the genetic markers for the disease, it still wouldn't tell us for sure what happened in 1964. Would it tell the doctors anything? If we wanted to do DNA testing, how much would it cost? Anyone know?

    Thank you for letting me share my family story with you. My mother tried her best to get the word to her family members about HCM, and the need to be screened. The HCMA provides an excellent vehicle for communication, education and encouragement to help me do my part to spread the word.

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

    [Re: DNA testing on deceased family member]

    Author: Amy Williams (---.proxy.aol.com)

    Date: 10-08-02 10:40

    Cathy,

    I can relate to your story. I and, most of my relatives have HCM, including my son. Fortunately We have never had a sudden death in our family...just deterioration. I do no that families with a sudden death are more at risk of having more sudden deaths.

    Some of the genes for HCM have been identified, and DNA testing can be done. I believe that one of the genes that has been identified is one that causes sudden death. I think it is definitly worth having DNA testing done. You may not learn anything, but if you do have that particular gene, then you would know you were at high risk, and take measures to prevent sudden death.

    As I am living in England, i don't know how to go about it in the States, or how much it costs. Maybe Lisa can help you.

    The gene in my family has not yet been identified. Has anyone had DNA testing for HCM done? If so...please share.

    Amy

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

    [Re: DNA testing on deceased family member]

    Author: Teri Emme (---.midco.net)

    Date: 10-08-02 18:03

    The same thing happened to my uncle 15 years ago. The boat tipped over when they were fishing and there was no reason for an autopsy. We were told that he died of hypothermia but the other two in the boat made it fine. Then my cousin who was 13 died, jogging in P.E. class, in August of 2002 and the family all has to be tested and the doctors told us that My uncle could have very well had it. I didn't know that they did DNA testing for HCM. What all does it consist of and what would it tell you? I have not been tested yet but will be soon. They say that HCM skips children, not generations. So far the ppl that have been tested in my family that is kinda how it is going.

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

    [Re: DNA testing on deceased family member]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 10-08-02 18:25

    Anyone interest in genetic testing call the HCMA office and we can hook you up with the right people.

    Best to all!

    Lisa

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

    [Re: DNA testing on deceased family member]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 10-08-02 19:35

    Dear Cathy,

    I suspect if you tell a cardiologist who specializes in HCM the story--just as you told us above--that cardiologist will be willing to make an informed guess as to whether it was an occurence of HCM-related sudden death or not. And will then factor that into consideration of whether you or other family members should have an ICD or not.

    Given that genetic testing in HCM is still in its infancy, testing might not tell you as much as a clinical analysis of your story would.

    Pat

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

    [Re: DNA testing on deceased family member]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-09-02 00:39

    Dear Cathy,

    HCM is genetic, but even so, a prudent specialist is probably going to evaluate each individual on their own. Obviously, family history is a risk factor. However, septal wall thickness, blood pressure response to exercise, fainting, heart attack, and ventricular tachycardia are also risk factors that need to be taken into account.

    There are genes for HCM that have been identified and it is certainly a good idea to get tested, however, it is not a quick result like a choleterol test. So you should all be talking to Lisa to see a specialist have complete evaluations on everyone so that if you need ICDs you can get them.

    I'm sorry for your familiy's loss.

    take care,

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

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