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HEADLINE: Coping with his deadly condition

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Tim Stewart Find out more about Tim Stewart
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  • HEADLINE: Coping with his deadly condition

    Copyright 2003 Newcastle Chronicle & Journal Ltd
    EVENING CHRONICLE (Newcastle, UK)

    June 23, 2003, Monday Edition 1

    SECTION: LIFE HEALTH, Pg. 18

    LENGTH: 1177 words

    HEADLINE: Coping with his deadly condition

    BYLINE: By Julie Cush, The Evening Chronicle

    BODY:

    One in 500 people in Britain suffer from a condition known as cardiomyopathy
    which affects the heart muscle and can result in sudden death. But rather than
    being a death sentence, many have the so-called timebomb under control and are
    living life to the full.
    Frank Lumsden has got used to the funny looks he gets when he suddenly leaps
    in the air.

    It can happen any time, at the local post office or sitting on the loo and
    although it only happens for split second it is extremely painful.

    But Frank, 63, isn't complaining. This is because every time it feels like
    his whole body has had a massive electric shock, the experience has just saved
    his life.

    Frank suffers from hypertrophic cardiomyopathy, a genetic heart condition
    which means his heart is enlarged and blood isn't being pumped around his body
    properly.

    Four years ago he had to be fitted with a defibrillator a battery-powered
    device the size of a bar of soap and the shock he gets means it has just kicked
    into action and restored his heart rhythm to normal.

    He said: "It only happens once a year and doesn't make any noise, but boy can
    you feel it. It literally makes me jump and although it only lasts for a split
    second it does hurt.

    "It happened once in the post office and I staggered a bit so there were
    probably some who thought I was drunk.

    "It also leaves me feeling groggy and as soon as it happens I have to get
    myself to hospital and get checked out.

    "It is horrible but I know it has just saved my life."

    Hypertrophic cardiomyopathy is the biggest single cause of sudden death in
    under 25s.

    Every week four people die needlessly often children and young people because
    the condition is not diagnosed or has been misdiagnosed.

    The condition hit the headlines when Daniel Yorath, the 15-year-old son of
    the soccer star, Terry Yorath and brother of TV broadcaster Gabby Logan, died
    suddenly while playing football.

    Frank, of Pelton, Chester-le-Street, married to Lorna, 60, and who has a son
    Mark, 33, wasn't diagnosed until he was in his 40s and puts that down partly to
    his own laziness.

    He said: "I wasn't exactly a sporty type. I liked the odd game of cricket or
    football but never over-exerted myself. I'm glad now that I was a bit lazy or I
    could have died suddenly before being diagnosed.

    "I was living in Derby at the time of my first problem. Doctors thought it
    was a heart attack. I spent time in hospital and was told to do more exercise
    the wrong thing.

    "It was only when I came back to the North East and went to the excellent
    Freeman Hospital in Newcastle that I was diagnosed after a heart scan.

    "Both my parents died of heart problems. The first thing I then did was send
    my son for tests which, thankfully, were clear."

    Frank believes he is very lucky to have had an early warning and supports
    screening all newborns for the condition.

    He said: "I have come to terms with my condition and although it is a drag
    taking 17 tablets a day I'm grateful to be alive some people are not so lucky.

    "I take things easy and make sure I don't walk too far.

    "It has been very hard for my family, especially for my wife who is a nurse
    and has been living on a knife edge. She is still working and every day she
    rings up to see if I'm okay.

    "The condition is not a death sentence but it makes sense to me to test all
    babies for cardiomyopathy and save more lives prevention is best as there is no
    cure."

    There are different methods of diagnosing the disease an electrocardiogram
    [ECG]; an ultrasound echocardiography [ECHO]; exercise tests; magnetic resonance
    scanning [MRI] and gene testing.

    Symptoms include breathlessness, often confused with asthma, fainting, heart
    rhythm abnormalities, chest pains and dizziness.

    It is a genetic condition and although not curable is almost always
    treatable.

    The Cardiomyopathy Association is a charity which provides support for
    families.

    It is also campaigning for screening of close relatives of sufferers and
    stresses the condition is not necessarily a death sentence.

    There are four forms of the disease: hypertrophic [HCM], dilated [DCM],
    arrhythmogenic right ventricular [ARVC] and restrictive [RCM].

    One in 500 people are estimated to have HCM in the UK although some experts
    believe that the incidence could be higher closer to 1 in 100.

    It is an excessive thickening of the heart muscle and may be triggered by
    high blood pressure or prolonged athletic training.

    It often affects young people who are physically active and in extreme cases
    sudden death can occur during exertion if the problem remains undiagnosed.

    A spokeswoman for the Cardiomyopathy Association said: "Now there is no cure
    for HCM although there is a slight possibility that some drugs may decrease the
    degree of muscle thickening.

    "Developments are most likely to come from the early detection of those
    carrying the gene for HCM."

    The dilated form of the disease is the No 1 cause of heart failure, leading
    many patients to need a transplant.

    Just over a year ago Leanne Nicholson's family were told to say their
    goodbyes as she lay in a coma after a virus attacked her heart.

    But thanks to a world-wide search a new heart was found and surgeons at the
    Freeman Hospital were able to save the 14-year-old's life.

    Her family dad Rob, and mum Helen, both 35, brothers Scott, 11, and Ryan,
    five, will always be eternally grateful to the donor who made the ultimate
    sacrifice to give Leanne life.

    Tests to diagnose irregularities

    How cardiomyopathy is diagnosed:

    Electrocardiogram or ECG

    An ECG records the electrical signal from the heart and is performed by
    placing electrodes on the chest, wrists and ankles. In hypertrophic
    cardiomyopathy the ECG usually shows an abnormal electrical signal due to muscle
    thickening.

    In a minority of patients [5-10 per cent] the ECG may be normal or show only
    minor changes. ECG abnormalities are also not specific to Hypertrophic
    Cardiomyopathy and may be found in other heart conditions.

    * Echocardiogram or ECHO

    This is an ultrasound of the heart. Like the ECG it is an entirely safe test
    and produces a picture of the heart where excessive thickness of the muscle can
    be easily measured.

    * Additional equipment called Doppler ultrasound can produce a colour image
    of blood flow within the heart.

    * For more information call the Cardiomyopathy Association on 0800 0181024 or
    visit www.cardiomyopathy.org

    Treating the heart condition

    Treatment for hypertrophic cardiomyopathy [HCM]:

    Beta-blockers; calcium antagonists; anti-arrhythmic drugs; anticoagulants;
    diuretics; antibiotics;

    Surgery: heart transplantation is suitable for a very small minority of
    patients

    * Other forms of treatment: Electrical cardioversion. Pacemaker. Dual Chamber
    Pacemaker. ICD [Implantable Cardioverter Defibrillator]. Catheter based
    treatments [e.g. alcohol septal ablation].

    Most patients with HCM have at least one close relative with the condition.

    There is a 50 per chance of children inheriting the condition from an
    affected parent.

    LANGUAGE: ENGLISH

    LOAD-DATE: June 23, 2003
    Thanks, Tim
    Forum Administrator

  • #2
    Re: HEADLINE: Coping with his deadly condition

    Those of us that were at the meeting in June saw the slide that showed how many ICD's were implanted in the USA and in other countries...the UK being very low on the list (2nd to last)...
    I am very happy that this man was one of the few who had the device!
    Sincerely,
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment


    • #3
      Re: HEADLINE: Coping with his deadly condition

      As was mentioned in the recent HCMA meeting, HCM is not sufficiently covered often in the press. Usually, after someone passes on from the disease, the local press has a comment. Recently, I sent Lisa the "Health" page and articles from the "Washington Post" to review. If possible other HCMA members, with Lisa's advice and/or consent, could offer to place articles about HCM in their own hometown media links. As we say, education is a storng tool.

      Wayne

      Comment


      • #4
        Re: HEADLINE: Coping with his deadly condition

        With Wayne's idea in mind, I would be happy to contact the local newspapers here in calvert county MD (We have 2 ) and share any articles Lisa would recommend. We have 75, 000 residents. Doing the math, that should be approx 150 people with HCM in this county.
        Chuck B

        An inch is a cinch, a yard is hard

        Comment


        • #5
          Re: HEADLINE: Coping with his deadly condition

          Call those papers...get the word out... give the reporters the HCMA number!!
          EVERY BIT HELPS!
          Lisa
          Knowledge is power ... Stay informed!
          YOU can make a difference - all you have to do is try!

          Dx age 12 current age 46 and counting!
          lost: 5 family members to HCM (SCD, Stroke, CHF)
          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
          Therapy - ICD (implanted 97, 01, 04 and 11, medication
          Currently not obstructed
          Complications - unnecessary pacemaker and stroke (unrelated to each other)

          Comment

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