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A few years ago, Catherine Stace was a high-flying businesswoman who juggled with the role of head of a charity with the life of a single mother to two boys.
But a 51-year-old energetic tick bite on vacation has completely shattered his life.
The complex and controversial illness that she thought she had caught as a result of the bite left her so sick that she feared for her life.
"I did not think I was going to live," she told nine.com.au.
"My left leg started to slide and my body started to decline, especially my memory.
"I could not pronounce words and started to forget the names of people, and when I went home, I forgot what I was doing.
"My high heels were gone and I was in bed at 7 pm."
The illness deprived Ms. Stace of her career as CEO of Cure Brain Cancer Foundation in Sydney, and let her spend her savings for the search for a cure abroad.
But now, Ms. Stace hopes that a new survey by charities will ultimately help up to 50,000 Australians to get the help they need.
Even getting a diagnosis of the disease, which is similar to Lyme disease, but which can not be officially known as Lyme disease has not been found in Australia, is notoriously difficult.
The doctors always told Mrs. Stace that her tests were going well and that she was just stressed.
This is only when a friend saw a story about Lyme disease on a current affair, she began to realize the similarities.
"She said," I think that's what you have, "said Ms. Stace, who began doing research online.
The grueling symptoms that she had had for months corresponded to what she was reading.
Mrs. Stace believes that she was bitten by a tick on the beaches of North Sydney in 2014.
It was the last stop on a vacation trip with his two children.
Three weeks later, the mother of two children began to suffer from flu-like symptoms.
Shortly after, the accomplished speaker was completely floored at an event she was talking about.
During her impressive career, she had spoken at prestigious events and venues, including the National Press Club in Washington DC, so she could not understand why she could not get through her speech and was shaking.
Climbing stairs to her apartment was a struggle, and there were times when she fell asleep at her office.
The businesswoman thought that she could have a brain tumor or have suffered a stroke.
But after hearing about the current Affair A episode, Ms. Stace managed to find a doctor in Sydney – few acknowledge the existence of the disease – and tests confirmed she was infected with borrelia, the type of bacteria responsible for Lyme.
Antibiotics helped a little, but it was far from being cured.
She was so sick, she had to quit her job and move to Bendigo, Victoria, after being unable to afford to stay in Sydney.
A potential cure was ozone therapy, which cost him $ 25,000 in a clinic in Cyprus. The controversial treatment saw ozone gas added to his blood.
Ms. Stace also tried a hyperthermia treatment – where the body is heated up to 40C to kill the bacteria, on the Gold Coast.
And while these treatments, along with alternative medicines, have helped a lot, she said that she was far from being cured.
"I was vibrant, energetic, career-driven, full of life and a practical, adventurous mom, loved life, had friends and was social," she said.
"I am a recluse now."
Ms. Stace uses the expertise she has developed in her impressive career to advance change.
She is a member of the LDAA (Lyme Disease Association of Australia) Board of Directors.
For years, diseases resembling Lyme disease have been completely rejected by doctors because they did not exist in Australia.
But a Senate survey in 2016 called "Growing Evidence of an Emerging Tick-borne Disease That Causes a Lyme Disease-Like Disease in Many Australian Patients" has finally forced the Australian government to act.
A doctor told the investigation that the diseases could affect up to 50,000 Australians.
The survey resulted in a long list of recommendations
This included spending $ 3 million for research, clinical trials and the development of treatment guidelines – but the LDAA said nothing was happening fast enough.
So he set up a scientific advisory committee.
It is led by Macquarie University Professor of Neuroscience, Gilles Guillemin.
He wants tick-borne diseases to be "notifiable" alongside diseases such as measles and salmonella, which means that authorities need to be alerted to cases.
"Science is the missing link that needs urgent attention to ensure the situation is properly addressed," he told nine.com.au.
"Together, we hold the power to change the lives of Australians suffering from debilitating symptoms derived from ticks."
Sharon Whiteman, CEO of the LDAA, said the condition is often misdiagnosed as everything from motor neuron disease to chronic fatigue.
Ms. Whiteman said it is vital that the new committee takes a "fresh and innovative look" at the issue and presents the results to the government.
"Patients with Lyme disease are medical refugees in Australia," she said.
© Nine Digital Pty Ltd 2018
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