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

Announcement

Collapse
No announcement yet.

UK takes action on SD in babies

Collapse

About the Author

Collapse

Lisa Salberg Find out more about Lisa Salberg
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • UK takes action on SD in babies

    HEADLINE: Parents call for action on sudden baby deaths

    BYLINE: Jo Revill: Health Editor

    BODY:


    AISHA DODWELL knew that something wasn't right with her baby boy, but the
    doctors seemed to disagree. She had taken Rio to the GP on successive occasions,
    but was told he was suffering from a viral infection that would get worse before
    it got better.

    'He looked so ill I decided I would take him to casualty, but as we stepped
    out of the front door he suddenly stopped breathing,' she recalled. 'I managed
    to resuscitate him for a few seconds, but then he stopped again and the
    paramedics couldn't save him.'

    Aisha now has another child, five-month-old Ella Rae. Her grief is still
    overwhelming and there is the nagging uncertainty about the real cause of Rio's
    death. A post-mortem told them it was myocarditis, an inflammation of the heart
    muscle, but they don't know what caused it. 'It doesn't explain much to us,'
    said Dodwell, from north London.

    She and Rio's father, Graham Idahen, were yesterday attending an annual
    support day organised by the charity Cardiac Risk in the Young for families who
    have suddenly lost a child or relative to a heart defect. The Observer was the
    first newspaper allowed in to talk to families who had travelled from around
    Britain to find out more about their own individual tragedies as well as talk to
    experts and counsellors.

    As many as eight people a week die unexpectedly from cardiac problems, but
    the NHS is badly equipped to give the survivors the support and information they
    need. Many of the bereaved spend months, if not years, trying to find out the
    exact nature of the illness; they face a much tougher problem attempting to
    ascertain whether their other children may be at risk.

    There is no national genetic testing centre in Britain for families most at
    risk from sudden cardiac death. Many of the genes have been detected, yet the
    NHS cannot offer any service to test the survivors. The only families who
    receive the tests are those where doctors, as part of their research, can send
    blood samples to Denmark or Italy.

    Very lucky families make it to Professor Bill McKenna, one of the world's
    leading experts in sudden death syndrome, the name for a collection of
    conditions which cause cardiac death. Hypertrophic cardiomyopathy, an
    unexplained thickening of the heart in young adults, carries a 1 per cent annual
    risk of sudden death. This genetically transmitted disease affects one in 500
    adults and is the commonest cause of sudden death in otherwise fit young people.

    Yet, despite the fact that there are effective treatments to prevent these
    deaths, there is no targeted provision in the healthcare system to manage this.
    Families with these problems are not being systematically referred to
    specialists or properly evaluated. They are not told that youngsters who enjoy a
    lot of sport are particularly at risk.

    'If we could get to these families, we could forewarn them of the risk, then
    look at treatments for them, such as drugs or pacemakers,' said McKenna,
    professor of cardiology at University College London, who runs a clinic from the
    Heart Hospital.

    He is scathing of the government's unwillingness to set up a proper system
    of referral to experts and evaluation for families. 'It's crazy that we've
    detected some of these genes and can't test those families most at risk,' he
    said.

    At yesterday's meeting, organised by the charity CRY (Cardiac Risk in the
    Young), families gathered to try and find out more about their own unusual
    condition. Charlotte Cooke said that her mother and her two sisters all appeared
    to carry the genes for the condition: 'There are 19 of us altogether, and we
    badly need to know whether we carry the good or the bad genes, but as it stands,
    we can't have those tests done.'
    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)

Today's Birthdays

Collapse

Working...
X