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My Brother's death and decisions about testing

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  • My Brother's death and decisions about testing

    [My Brother's death and decisions about testing]

    Author: Kathryn (---.mcc.ac.uk)

    Date: 08-06-02 13:38

    Hello,

    My brother just recently died (November last year), he was very fit and very active (rock climber) and so it was a great schock to us all. He has 2 children a son 14 and daughter 12 and now his wife has to make a decision to have the children tested or not. It is difficult for many resons, apart form the emotion there are the longer term problems of insurance and emigration (should the children wish to go anywhere) and then the children may have children. I am sure people know this story. If someone could answer a few questions for me I would be greatful. Firstly what are the chances of this being passed onto the children? How can it be detected and at what point do the children become at risk? We have no way of knowing my whole family history but could we assume that this may 'skip' a generation? is this condition also called 'Hokum desiease' I guess my brother's wife may have other questions but as I am a researcher (social science) I said I would first try to find out something before she makes any decisions. Many thanks

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    [Re: My Brother's death and decisions about testing]

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

    Date: 08-06-02 14:38

    Dear Kathryn,

    I'm very sorry for the loss of your brother. I do know first hand what it is to lose a family member suddenly and my thoughts are with you and your family.

    Sadly, HCM is the number one cause of sudden cardiac death in young athletes and your family's tragedy is very familiar to a lot of us here.

    To answer your questions...

    HOCM stands for Hypertrophic Obstructive CardioMyopathy. HCM is the non-obstructive form. The obstruction refers to whether or not the septum wall is thick at the top and gets in the way (obstructs) the mitral valve.

    Please read the rest of the web site for a really good primer on HCM/HOCM and what the screening process is and various treatments, etc. Most people with HCM/HOCM live a full life span.

    HCM is genetic. It is autosomal dominant and if HCM/HOCM is what your brother had, the odds are that each child has a 50/50 chance of carrying the gene. Typically, at least one child will have it --in my family for example, fully 50% of us have HCM.

    It is IMPERATIVE that the children be tested. If insurance is a concern, get them life insurance NOW and then get them screened for HCM immediately afterwards. HCM typically makes its "appearance" in the early teens and 20s, so they need to be screened now and every 12-18 months till they are fully grown, then every 2-4 years after that (HCM can lay dormant till your 50s or later in some cases). Read the Diagnosis section in the web site for more info on screening.

    It is also important that they see an HCM specialist so they can be evaluated for any risk of sudden death as well. If so, they can get defibrillators which would save their life if they developed ventricular tachycardia/fibrillation. Please call the office at 973-983-7429 to get the names of pediatric HCM specialists and to get on our mailing list.

    I can't emphasize enough how important it is that the kids get tested. AND YOU. All of your brother's siblings and your parents should get echocardiograms. Sudden death can be prevented if HCM is diagnosed.

    Please read as much of the other discussion board threads as there is a lot of good info in there.

    take care and let us know how your screening goes.

    Sarah

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    [Re: My Brother's death and decisions about testing]

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

    Date: 08-06-02 20:26

    Kathryn,

    I am very sorry to hear of your loss and know it must be difficult for your entire family. I am assuming be your email address that you are in the United Kingdom. There is a wonderful organization called the cardiomyopathy association located in the Watford-Hertz area. I suggest you contact them for names of doctors in your area. They can be found on the web at cardiomyopathy.org.

    Best wishes,

    Lisa Salberg

    HCMA

    PS - Sarah that was a wonderful reply!

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    [Re: My Brother's death and decisions about testing]

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

    Date: 08-06-02 20:55

    Dear Lisa

    Thank you!

    S

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    [Re: My Brother's death and decisions about testing]

    Author: kathryn (---.mcc.ac.uk)

    Date: 08-12-02 05:57

    Many thanks for your reply, I will take on board what you say. However I do feel that the situation is slightly different in the UK with regards to insurance, travel and homebuying etc. As for my self I am also very active, I run, play squash, hill walk and ski and am unsure what I will do as I feel these thing are part of who I am and I am not able nor do I want to simply stop just because I might have this condition, once a person is tested it is on one's medical records and this has huge implications as I am sure you are more than aware. The web sites I have read paint a sobering picture for people who have lived an active life to all of a sudden stop and not do anything is a little hard to take in after being told for years not to smoke, drink and take lots of exercise. But I am also sure you have heard this many times also. Anyway many thanks for your advice I will pass it all on.

    Best wishes

    Kathryn

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    [Re: My Brother's death and decisions about testing]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 08-12-02 12:59

    Kathryn,

    I totally understand about not wanting to simply stop your lifestyle because you have a heart condition. I hope you don't mind saying so, but I feel you should still be screened anyway. The way I see it, you may not have HCM after all, and your life wouldn't change in the least. If you do have HCM, it doesn't mean you have to immediately become a non-active person.

    Each person is different. You would have to coordinate with your doctor to find out lots of information, then the two of you would have to set the best course for you to follow. When you play squash and hike do you get short of breath beyond what most other active people feel?

    There are HCM people who do not have obstruction associated with their condition. These people often have few symptoms. Others have electrical issues as their main symptoms. Like I said, it's very individual how people react to HCM.

    Your brother died at an early age. Was he being physically challenged, like rock climbing, when it happened? Or was it a heart attack? This is something that would be key for a doctor to know in deciding how to treat any other family members, as family history is very important to know. This doesn't mean that since he died suddenly, others will too. It means that there is perhaps a higher chance that HCM will manifest itself the same way and the same thing could happen to someone else.

    The question you have to ask yourself is this: Are you willing to risk your life for the activity that you love? If you were to find you have HCM, would it not be worth slowing down some? You probably wouldn't have to stop your favorite activities unless you have symptoms that suggest you should or unless the risk of sudden death is too high. Is that something you're willing to risk?

    I hope I haven't been too hard on you, but I wanted to be sure you understood what the risks are if you don't get screened. Please forgive my forwardness. And good luck.

    Reenie

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    [Re: My Brother's death and decisions about testing]

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

    Date: 08-12-02 14:00

    Dear Kathryn

    I need to point out that the material and postings that you read about HCM are weighted with people who are usually sicker than the average or have more problems than average because they need the most support.

    Every case of HCM differs --even within the family. My brother is much sicker than I am and we both live pretty normal lives. He plays tennis and does yoga and golf.

    HCM is not an automatic "never exercise" sentance whatsoever. There is a strong chance that you don't have it at all, and never will. However, if you do have it, there are medications that can help your heart and help you live better.

    If you did have a risk of sudden death, they can implant a device that would save your life should it need it. After a month of recovery from the surgery, most people resume their regularly scheduled life and never know the ICD is there.

    Please get screened and please don't think that HCM is the end of the world.

    S

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    [Re: My Brother's death and decisions about testing]

    Author: Kathryn (---.mcc.ac.uk)

    Date: 08-13-02 12:20

    Hello,

    many thanks for your responce. Time will tell (as is said).

    Kathryn

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    [Re: My Brother's death and decisions about testing]

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

    Date: 08-13-02 13:08

    Dear K

    Don't forget to keep us posted on how you are doing ---HCM or not.

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

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