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News from Wiltshire Times May 03, 2007
Mums raise awareness on rare disease
Exclusive By John Ballard
TWO mothers whose daughters are surviving an incurable genetic
disease against the odds are spreading awareness of the condition.
Fer Pidden's 26-year-old daughter Natalie was expected to die in her
teens from Mucopolysaccharide (MPS), a cruel life-limiting disease,
which causes physical disability and mental deterioration, often
leading to death in childhood.
Jackie Chisling's 14-year-old daughter Hannah is a victim of the
same disease, and like Natalie, is confined to a wheelchair and has
to be fed through a tube.
Mrs Pidden, of Westbury Leigh, said: "You never accept that this has
happened to your child, you just learn to live with it.
"In a way you tell yourself that you want it all to be over, but
when you do that you start to feel guilty for thinking in that way.
"Natalie has done so well to continue as she has for so long,
because in my head I have been planning her funeral for many years.
"Now I just want her to be as comfortable as possible and I hope for
the best for her."
Every eight days a baby is born in the UK with MPS or a related
disease. As there is no cure, the best sufferers can hope for is
treatment for symptoms as they arise.
Symptoms, which vary in severity and depend on the type of MPS a
person is suffering, range from frequent ear and chest infections in
the early stages, through to speech loss, growth restriction and
whole variety of disabilities as it progresses.
However, modern advances are improving the lives of sufferers
Prenatal testing is available to determine if a foetus is affected
by the disorder, and in some cases bone marrow transplants can
improve a patient's quality of life.
Enzyme replacement therapy is also a treatment in certain cases.
Natalie was diagnosed with MPS at the age of three-and-half, while
Hannah was two years old.
Mrs Chisling, of Queen's Gardens, Hilperton, said: "We were told
when Hannah was diagnosed that 14 was about the top age children
with MPS could be expected to live to, so she is doing very well.
"At least one of the kindest things about the disease is that they
don't know they've got it, but it is very tough for everyone
involved, including the families, because people with MPS require
24-hour care.
"When you find out your child has MPS it certainly puts life into
perspective."
Tuesday has been designated by the MPS Society as MPS Awareness Day,
in an attempt to teach people about the disease and encourage them
to raise funds.
The society, which is celebrating its 25th anniversary this year,
supports individuals affected by MPS, as well as their families,
carers and professionals.
Both Mrs Pidden and Mrs Chisling have been involved with it for a
number of years, and would like as many people as possible to find
out about the work it does and support them. To find out more about
the MPS Society visit www.mpssociety.co.uk
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