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  • New and have a few questions

    [New and have a few questions]

    Author: Mark (164.156.243.---)

    Date: 10-07-02 14:37

    I was diagnosed last year with HCM w/obstruction, but asymptomatic and otherwise very healthy. I was in the military, until I was diagnosed and my waiver was turned down. The condition is a disqualifier for continued service and not eligible for compensation/disability. Bummer. Was anyone else a member of the armed services? I want to ensure that it is a non-eligible condition. It's a wonderful Catch-22. No longer fit for duty, but no VA assitance.

    I am a father of two very young boys. My parents and immediate family show no signs of HCM and, as I said I am asypmtomatic and pretty healthy. I plan on having the boys tested, but don't know how early I should do it. Reading some of the threads, it looks like it can manifest very early in life. How young and how often?

    This has been pretty frustrating. I go from being a member of the military to near couch potato, since I have to stop the more intense aerobic activity. I am allowed to walk, some swimming, and light biking. Will anyone tell me if I must also curtail "marital relations?"

    That's about it.




    [Re: New and have a few questions]

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

    Date: 10-07-02 14:53


    I also have HCM with obstruction. Unfortunately I do have symptoms. However, they are controlled with medication. You should have you children screened, as there is a 50% chance of them having the disease. HCA can show up at any age, while the child is still growing. I was diagnosed at 5, while my brother was not picked up untill he was 16. My son was picked up at 4 months. Even if a child appears to be clear, he should still be routinely screened into early adulthood. Also, some of the genes that cause HCM have been identified (far from all of them). If you have one of these identifiable genes, your children may be able to have a blood test to see if they have the disease.

    I hope that you are seeing a HCM specialist. He should be able to answer all your questions. Exercise tolerance varies between individuals, so that is definitly a question for your doctor.


    [Re: New and have a few questions]

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

    Date: 10-07-02 15:24

    Dear Mark,

    HCM is a very complicated disease. Please read the rest of this web site for more info on it and you can also buy a great book from the HCMA about it.

    As for quality of life, most HCMers live a long, full life. Your activity level should be based on what you are capable of doing. If it hurts, don't do it! There are a bunch of former military people here. It sounds crazy that they don't give you any benefits. I would definitely investigate that. Other military people may weigh in here or Lisa (our President) probably knows something about it.

    The best thing you can do is to see a specialist. Even though you feel fine, HCM is not well understood by most local cardiologists because it expresses itself so differently in everyone. Only doctors who see lots and lots of it can really treat you properly and ok you for exercise and make sure your family is screened properly, etc etc. Calling the HCMA at 973-983-7429 will get you started and Lisa can talk to you about the different specialist centers.

    As for screening the kids, yes, they need to be screened but depending on their age, you want to make the echocardiogram as low key as possible. Sometimes local doctors stress the negative side of the disease, which is certainly there, but not the most likely scenario and therefore should not be emphasized with kids.

    And to remind yourself ---depending on your HCM you may have more "life" in you than you think ---just be sure you are seeing a specialist to get the AOK on what you are doing.

    take care



    [Re: New and have a few questions]

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

    Date: 10-07-02 18:36


    A few questions:

    1. What branch of the service?

    2. How long were you active duty?

    3. What job field?

    4. Did they separate you or discharge you?

    You may have VA disability rights. I have no idea. I can tell you that my husband is AF and is still active duty, even with an ICD. (defibrillator) I don't know a lot about how they determine who gets to stay and who doesn't but I believe my husband is one of very few who didn't get released. Feel free to email me directly if you want. I don't know if I can help or not, but will be glad to try.

    We have 3 children and nobody in Roger's family has any signs of HCM that we know of, including our kids. His grandmother has congestive heart failure and arrhythmias, but it's not necessarily related. And she'll be 90 next month.

    My husband is also mostly asymptomatic. Occasional shortness of breath. He has a waiver for no more PT or ergonomic testing. Also, no chem gear, flack vest, etc. And he can only be stationed in the 48 states now.

    As far as "marital relations" go, our doctors have said that as long as there are no complications, it's fine.

    I hope this helps you.

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

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