If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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  • Looking for answers

    [Looking for answers]

    Author: Pete T (---.buf.adelphia.net)

    Date: 11-12-02 07:22

    Hello to you all -

    I am a paramedic and had what will probably be a post-mortum diagnosis of HCM patient for a call last night. 24 years old, tall, and athletic. He collapsed while playing basketball with friends at the local state college. This event has prompted me to stay up after my shift and do some research on HCM this morning.

    The website has proven to be very informative and I thank you for that. I have two questions that I hope to get answered. First, is HCM more prevalant in African-Americans? One of the doctors at the hospital where we took the patient believed it is, but was not sure himself. Secondly, is there any likeness of HCM to a disorder called "Marfen's Syndrome"? Are they the same or two totally different things?

    Thank you in advance for any information you can offer and God be with those of you living day to day with this disorder.

    Pete T.

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    [Re: Looking for answers]

    Author: maura mendoza (---.proxy.aol.com)

    Date: 11-12-02 07:53

    Pete,

    No ~ Thank you for your intrest in HCM, it's all about awareness, and education. I am sure that Lisa will have some answers for you.

    My name is Maura Mendoza, I lost my son Travis to HCM in August he was also altheletic and a strapping 180lbs, he was a mere 14 yrs old. He had not been diagnosed. From your post I assume the paitent had already passed, I know that when Travis died, he had immediate care, he had CPR with in 2 minutes of his collapse, he died before he even hit the ground. I am curious if this PT had immediate care ? Thank you again for inquireing about HCM. God bless you too, Maura , Mother to Travis,

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

    [Re: Looking for answers]

    Author: Lisa Salberg (208.47.172.---)

    Date: 11-12-02 11:36

    THANK YOU for showing such an interest!

    1. HCM and Marfans are completely different.

    2. Although HCM is not more common in any one race, religion or ethnicity... over 50% of the deaths on the playing field are in African American/black young men.

    It is thought to be because of a lack of access to quality health care within the community.

    Please let us know what city and State this occured in.

    Once he had his sudden death episode only prompt defibrillation would help... I am sure you did all you could to help this young man. On behalf of all those with HCM I thank you for being on the job day in and day out and looking out for all of us.

    Thank you again for your interest and caring.

    I know it is not easy to have witnessed such a tragic event, even if you have been trained. You can feel free to vent your anger, frustration or whatever will help you and your team get through this... that is what we are here for.

    Sincerely,

    Lisa Salberg

    President

    HCMA

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

    [Re: Looking for answers]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 11-12-02 17:55

    FYI

    People with Marfan's tend to have enlarged hearts, which explains why they get confused --especially with basketball types as Marfan's patients are very tall, thin, and "basketbally" but the heart is secondary to having Marfan's whereas HCM is a genetic disorder.

    S

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    [Re: Looking for answers]

    Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)

    Date: 11-12-02 20:06

    Marfan Syndrome is also a genetic condition that affects connective tissue and can affect multiple organ systems in the body. It can affect eyes(near-sightedness or lens probs), bones (loose joints, spinal curves, usually disproportionately tall), blood vessels(weakened walls), which will affect lungs, and heart (may see mitral valve prolapse from weakened valve). A devastating consequence is a widened and weakened aorta arising from the top of the heart which can rupture (aneursym), resulting in death from blood loss. The National Marfan Foundation has an excellent web site for additional info.

    http://www.marfan.org/

    Linda

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

    [Re: Looking for answers]

    Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)

    Date: 11-12-02 20:15

    Pete, Let me voice again, Lisa's thanks to you and all EMS/emergency responders for caring and being there for the rest of us. I've done my share of that type of work, so I can identify with what you are going thru and feeling right now. Yours is not just a job, it's truly a part of your life that goes with you, too often stays with you thru the night, and comes back to you when you least expect it. Take care of yourself, and just know that you are doing a wonderful job and service to all of us. Linda
    NOTE: This is a post from the previous forum message board.

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