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Mr and Mrs Ber
attended the inquest into the death of their late daughter, Kasia, today.
Their daughter died of Sudden Adult Cardiac Death Syndrome (SADS), often
known as sudden cardiac death.
Mr and Mrs Ber are
still numb with grief at the loss of their 17-year old daughter. That
grief is particularly acute when, every day, they have to live with the
fact that her death was avoidable.
The cause of her death
was a hereditary heart condition, ‘Long Q-T syndrome’. They said:
“To lose a child in any way is to suffer indescribable pain and grief. To
lose our daughter in such sudden and tragic circumstances has only made it
all the more difficult. We are particularly sad knowing that Kasia’s death
could have been avoided, especially if there was more awareness of Long QT
Syndrome, and other symptom-less heart conditions that kill many young
people in the UK every week." |
Medical details of Kasia's
case |
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Related
media coverage |
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Read more about SADS |
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Read more about Long QT
Syndrome |
"We
would like to become involved with Cardiac Risk in the Young (CRY) to campaign
for more screening to be made available for young people. We would also
like to raise awareness of such conditions so that other parents do not have
to suffer as we have, from something that is avoidable. We would also like to
take this opportunity to thank all the family and friends that have supported
us through this difficult time, and the team at CRY for their guidance.”
There are at least 8 deaths
a week in the UK due to sudden young cardiac death. It is impossible to
explain the depth of pain and devastation that these tragic deaths cause.
Kasia’s grandfather died of arrhythmia (unusual rhythm of the heart -
relating to Long QT Syndrome). Her mother was diagnosed with Long QT syndrome
but the diagnosis was not followed up within her family, something which would
have saved Kasia’s life. Kasia’s aunt also died of arrhythmia and following
Kasia’s death, her aunt’s two children were diagnosed with Long QT syndrome.
The condition can be treated by the use of relatively inexpensive drugs, or if
necessary surgery to implant an Implantable Cardioverter Defibrillator (ICD).
Unaware of the nature of
her heart condition, Kasia had consulted her General Practitioner because she
was having ‘funny turns’. The ECG that he carried out 11 days before she died
showed that she had the hereditary heart condition but the diagnosis was not
made and she was not treated. Since her death, the condition has been found in
two of her cousins and as a result they can be treated with inexpensive
beta-blocker drugs.
Mr and Mrs Ber are fully
aware that nothing will ever bring Kasia back but they wish to do all that
they can to ensure that other families do not have to lose a child in these
circumstances.
CRY has provided Mr and
Mrs Ber with valuable advice and support following Kasia’s death. CRY
continues to campaign for greater awareness and knowledge of Sudden Cardiac
Death, which could avoid the current unacceptable number of young people which
die each week in the UK from such conditions.
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Related media coverage
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