Home' Scoop : Scoop 52 Winter 2010 Contents about how it happened, and that s it. We just
get on with every hour, every day."
Carol Adams is one determined lady. She has to
be, as the main carer for her daughter, Theda, 34.
A once vibrant and talented journalist, Theda was
afflicted by debilitating Myalgic Encephalomyelitis,
also known as chronic fatigue syndrome, a situation
made worse by the fact that many are reluctant to
acknowledge the illness even exists.
"Theda was a real go-getter," says Carol, who
lives in Perth. "Then, when she was 24, she went
to the UK and caught flu. She just couldn t get
better and became increasingly lethargic, found
it hard to cope at college, and managed just one
more year of her studies."
Diagnosis varied from depression to a referral to
cancer specialists -- meanwhile Theda s condition
continued to deteriorate.
Her hormones "went haywire", says Carol, and
she had blinding headaches. The fact her own GP
didn t believe in ME didn t help.
Carol spent thousands of dollars on treatments
for Theda, but nothing worked.
"She has no good flora in her gut, and just lies
in a darkened room, unable to cope with noise or
stimulation of any kind," she says.
Carol s battle to have her daughter s illness
recognised and treated reached a nadir when she
found herself planning her funeral.
"Theda got to the point where she wanted
to end it all, and we discussed it. I had used
everything in my own Super , as well as Theda s
pension. We had nothing left, and that s when I
started fundraising," she says.
A Facebook page, Help Theda, quickly gained
a following, with journalists from around Australia
highlighting how sufferers of ME had been given
the run-around by the medical profession.
"About a year ago, Theda was rushed back to
hospital," says Carol. "She was 36kg, could only
suck on ice cubes and was vomiting every half
hour. The following day she was in so much pain
she thought she d die, and asked to go home. The
doctor told her to stop putting me through so
much grief, to pull herself together and get
up out of the wheelchair. It s that attitude I m
fighting, such insensitivity, and I am eternally
hopeful that we will prevail."
Now there is some hope Theda may respond to
a new therapy developed in the UK.
"We at last have more than a glimmer of hope.
We d love to get her to the stage where she can go to
the beach, where she can write again," says Carol.
If ever there was a golden child, it was Amanda
Young. The only daughter of Barry and Lorraine,
she was Head Girl and Dux at Gosnells Primary
School, played the flute and organ, was a talented
dancer as well as a swimmer, rower, rider and
athlete. She spoke Japanese, travelled to Russia
with the National Youth Science Forum and to
Canada with the Penrhos College cross-country
team. She won the prize for the most outstanding
contribution to the college community in 1996.
In 1997 she entered university. And then it all
came to an abrupt end.
Lorraine, a nurse, became anxious about
Amanda, 18, around teatime one day.
"She started complaining of a bad headache
and painful muscles. She had cold hands and feet,
was shivering, despite having a fever of 40 degrees,
and just couldn t get warm," Lorraine says.
Amanda asked her mother whether she thought
she might have meningitis and then at 9pm, she
asked to see a doctor.
"We took her to Armadale hospital and had
to take a seat as a nurse said she didn t think she
looked that ill. All the while Amanda was
vomiting and lying in pain," Lorraine says.
Once admitted, Amanda was given a "cursory
look" by a doctor who ordered x-rays, a lumbar
puncture and blood tests, which would take
three days to be sent back.
After the lumbar puncture, the doctor said
Amanda was "lucky" not to have meningitis.
She was kept in overnight but went rapidly
downhill, unable to keep anything down and
with awful diarrhoea.
Her parents went back to see her at 8am and
found her being showered by the nurses. She was
covered in a red rash and her legs were swollen.
A new doctor came in and said she was a
very sick girl. "He pumped antibiotics into her --
antibiotics she should have had immediately when
we arrived at the hospital -- and transferred her to
Fremantle hospital," Lorraine says.
At 5pm, less than 24 hours after the first sign
of her symptoms, Amanda died, not of meningitis,
but of meningococcal septicaemia.
The missed opportunities and diagnostic
incompetence may have ultimately cost Amanda
her life, but the disease itself is a rapid killer,
particularly dangerous for the under-fives and
teenagers. Many victims lose limbs due to blood
poisoning, which spreads quickly through the
body, even when diagnosed correctly. It s a
killer, but it can be stopped in its tracks.
Soon after Amanda died, her parents were
approached by Bruce Langoulant from The
Meningitis Centre, asking if they would like to
set up a foundation in Amanda s name. They
agreed on the proviso that the mission statement
would be all about education. "We want everybody
to be aware of the disease and be assertive when
seeking treatment," says Lorraine.
The Amanda Young Foundation is now one
of the foremost charities in the fight against
"We have given $70,000 to fund a PhD
student testing live tissue, to find out more
about the disease," Lorraine says. "A vaccine is
our dream and there are trials on the cards.
"Monash University used Amanda s case as a
teaching tool. Princess Margaret Hospital have
"We want everybody to
be aware of the disease
and be assertive when
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