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Kathy
Moyle, who, after having lost three members of her family to the rare
genetic disorder Long QT Syndrome, has just discovered that she has the
disease herself,
A
Devon grandmother who has lost three members of her family to a rare
genetic disorder has just discovered she has the condition herself.
Sudden
death syndrome has already claimed the lives of two of Kathy Moyle’s
daughters and her 17-year-old grandson. But now test have shown that the
60-year-old also has the condition.
Kathy
was tested, along with other members of her family, after she started to
have blackouts, and initial results show she, too, has the potentially
fatal Long QT Syndrome.
The
hereditary disorder affects the heart’s electrical rhythm and can occur
without warning in otherwise healthy people.
Mrs
Moyle said: “The tests we had have found that I have got Long QT, which
is what my daughters and grandson died from.
I have
to go back to London on April 26 to find out what they can do to help me.
“I
have had three massive blackouts recently, so it is quite worrying.
I haven’t had any treatment yet, and I’m not sure whether they
will put me on beta-blockers or fit me with a defibrillator. “Its very
worrying, we are all on edge. We
were supposed to have tests way back in 1979 when Pauline died, but they
never happened.”
The
news was one more blow for Mrs Moyle and her family.
As the
Echo reported last week, a Private Member’s Bill calling for automatic
screening of people at a high risk of sudden cardiac death syndrome was
put on hold.
That
was the latest in a long line of setbacks for Mrs Moyle, who lives in East
Budleigh, and her family.
Last
year the heart of 38-year-old daughter Rosaleen - which Mrs Moyle believed
may have contained vital clues that could save the lives of other members
of her family in the future,went missing after being posted from the Royal
Devon & Exeter Hospital to a pathologist for examination.
Rosaleen,
known as Lynn, died suddenly at her home in Exmouth in November 2002.
Her
death occurred one year to the day after her 17-year-old son
Matthew—Kathy’s grandson-was buried.
Rosaleen’s sister, Pauline also died suddenly in 1979 at just
16-years of age.
Other
family members are still awaiting the results of their tests for Long QT.
Last
week the Private Member’s Bill – due to be presented to Parliament by
MP Dari Taylor and calling for automatic screening for people at a high
risk of sudden cardiac death syndrome – was put on hold.
Mrs Moyle said she was extremely angry about the delaying of the
Bill, which was backed by charity CRY- Cardiac Risk in the Young – and
supported by former England cricketer Ian Botham.
She
said, ”It would have made a vital link between a death, the doctor, the
hospital and the coroner:
“If
information could be quickly passed between these people, the possibility
that another family member might die through this disease, might be
stopped.
“The
Bill could have achieved this liaison.
It just makes me angry that it has been put back.”
CRY
said that immediate screening of families after a sudden death was vital
for identifying genetic faults in the heart and preventing further deaths.
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