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  • 14 year old son

    [14 year old son]

    Author: Cassandra (24.70.156.---)

    Date: 10-16-02 14:26

    Hi,

    My 14 year old son was just recently diagnosed with HCMA. We live in a smaller Northern Ontario community and have to travel by car 6 hours for visits at Sick Kids Hospital in Toronto.

    I have been unable to locate any books on this condition with children or teenagers. Can anyone recommend book titles that I can order. This is still very new to us, we just found out last month. No one has been diagnosed in our family before and we have so many questions that we forgot to ask while there. We have another appointment in November for a stress test.

    My son started having chest pains this summer, which led to his diagnosis. We have been told his left ventrical is 19 mm compared with the other at 9 mm. I do not know if this average for a teenage with this condition.

    Any information provided or correspondence will other parents will be much appreciated.

    Cassandra

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    [Re: 14 year old son]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-16-02 14:38

    Cassandra -- I strongly suggest that you call the President of the HCMA, Lisa Salberg, at 973-983-7429. Lisa has published a book all about the condition.

    (Lisa ... I'm still awaiting my copy!)

    Additionally, Adam P has also posted a message stating that he would be glad to write with or speak with other children who have HCM/HOCM! Refer to this link to see his post http://www.hcma-heart.com/messages/r...&i=4771&t=4771

    I wish you and your son well.

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

    [Re: 14 year old son]

    Author: Adam P (199.88.72.---)

    Date: 10-16-02 15:31

    Cassandra,

    I am a 22 year old male who has HCM. I was diagnosed when I was in my teens and I can give you some information about the disease. Since you don't seem to have a documented family history I am sure you have many questions. My unlce Robert P also writes on this message board and you should direct some questions his way. He is a doctor who had a heart transplant due to deteriotation of his heart from HCM ten years ago. As for a little more information about me, my father and uncle had the disease until they got heart transplants. My brother and I both currently have the disease although neither have us have experienced any symptoms yet and hopefully we never will. My brother is 28 years old and is on Verapomil which is a drug commonly used to control heart rate in HCM patients. I, on the other hand, do not take any medication for the disease. We both live very regular lives and there is no reason to think that your son won't be able to as well as long as necessary precautions are taken and good advice is sought and adhered to. That is not to say that with all that your son is guaranteed to live a "normal" life because everyone's case of HCM is different ie. it manifests itself in different ways and progresses at different rates. But the key point in all this is that many people live pseudo-normal lives with this disease. The fact that there is no known family history means to me that people have had this disease in your family but didn't even know it. That is indeed good news if you ask me because it is possible that the form of the disease in your family is much more mild than the form that my uncle and father suffer from. But it is essential that your son get the proper medical care ASAP. I would definitely recommend that you speak with my uncle because he is an expert on the subject as he is a doctor who has had this disease. If you need anything else please don't hesitate to write. And remember, your son needs assurances from you that he will be okay so please don't over worry about him because it could negatively affect his emotions after learning he has this disease. Be there for him and help him and everything is going to be fine.

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

    [Re: 14 year old son]

    Author: Julie Petitpas (---.proxy.aol.com)

    Date: 10-16-02 22:07

    Amazon.com has some books on it.The Official Patient's Sourcebook on Hypertrophic Cardiomyopathy -- James N. Parker; Paperback

    zShops : See all 8 results in zShops...

    * Sourcebook covering Cardiomyopathy - Hypertrophic [Adobe eBook] -- Price: $24.95

    * The Official Patient's Sourcebook on Hypertrophic Cardiomyopathy [Adobe eBook] -- Price: $24.95

    * Sourcebook covering Hypertensive Hypertrophic Cardiomyopathy [Adobe eBook] -- Price: $24.95

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

    [Re: 14 year old son]

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

    Date: 10-17-02 10:38

    Julie -

    I have no idea what is in this book - The author has several books out on many disease so do not expect a specialist view - -

    I will get a copy of the book and share my views.

    Lisa
    Last edited by hcma; 03-21-2012, 12:41 PM. Reason: removing last names
    NOTE: This is a post from the previous forum message board.

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