Time to Recognise Lyme Clock, Australia. Presented to the Senate Inquiry Committee at the Brisbane Hearing on April 15th 2016
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The Time To Recognise Lyme Clock (pictured opposite) and the brief stories of the people pictured on the Clock that were presented to the Senate Inquiry Committee in Brisbane on April 15th 2016, are reproduced below in audio and hard copy format.
Photos in Banner/ Page Heading:
Left: Karen and Senators Wang, Madigan (back row), Moore and Siewert at the Senate Hearing with the Clock. Right: Large Group photo of the Senators and some (A number of people had left by photo stage) of those that attended the Brisbane hearing. A brief background regarding the Senate Inquiry:
In November 2015, the Senate referred the following matter to the Senate Community Affairs References Committee for inquiry and report: "Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patients" There was over 1000 submissions to the Inquiry, and a number of hearings held around Australia. For further information click on the following link to see the Parliament of Australia website regarding this Inquiry |
On behalf of Lyme Australia Recognition & Awareness and Global Lyme & Invisible Illness Organisation Karen Smith (Co-founder of GLiIO) was allocated 45minutes to speak / present at the Senate Inquiry hearing in Brisbane on the 15th of April.
At the end of Karen’s opening statement to the Senate Committee with regards to the clock presentation Karen noted: "To close Lyme Australia Recognition & Awareness (LARA) and Global Lyme & Invisible Illness Organisations (GLiIO's) allocated session today, Matt Chant will finish with a presentation on behalf of all those who have lost loved ones, and all those who are living with Lyme & Co., The Time to Recognise Lyme’ Clock project aims to show the human side of this disease and the devastation its denial and lack of treatment and medical care is creating". (A link to the submission from LARA/GLiIO will be provided in the very near future)
Matt opened the Clock Presentation with: "The Time to Recognise Lyme Clock is a call to Action, to show that acknowledgement and treatment can help restore Hope and Health, and that the denial of Lyme and other Vector borne diseases in Australia is causing devastation and the loss of years of people’s lives, and in far too many instances, their death".
At the end of Karen’s opening statement to the Senate Committee with regards to the clock presentation Karen noted: "To close Lyme Australia Recognition & Awareness (LARA) and Global Lyme & Invisible Illness Organisations (GLiIO's) allocated session today, Matt Chant will finish with a presentation on behalf of all those who have lost loved ones, and all those who are living with Lyme & Co., The Time to Recognise Lyme’ Clock project aims to show the human side of this disease and the devastation its denial and lack of treatment and medical care is creating". (A link to the submission from LARA/GLiIO will be provided in the very near future)
Matt opened the Clock Presentation with: "The Time to Recognise Lyme Clock is a call to Action, to show that acknowledgement and treatment can help restore Hope and Health, and that the denial of Lyme and other Vector borne diseases in Australia is causing devastation and the loss of years of people’s lives, and in far too many instances, their death".
Audio of the Clock introduction / presentation :
Call to Action: Acknowledgement & Treatment Can Restore Hope & Health
With a diagnosis, people can begin to understand their illness, know what to treat, and start to regain their health.
With a diagnosis, people can begin to understand their illness, know what to treat, and start to regain their health.
Sarah Knights: Victoria: Age: 23. Sick since the age of 12. Since 2005 Sarah’s health has been up and down.. A severe downturn in 2014 saw her lose the use of her legs. Doctors had no idea what was wrong and she was told to ‘get used to life in a wheelchair’. Sarah was diagnosed with Lyme & Co. early in 2015 and she is slowly regaining the use of her legs.
Some words from Sarah that echo the sentiments of those living with Lyme & Co:
My life has been turned upside down; there isn’t a single aspect that has remained untouched. My independence, finances, freedom, friendships, career just to name a few. Since the age of twelve everything has been dictated by illness despite best attempts to stop it. I have been accused of putting it on, or making it up but what no one does see is the many tears that have been shed as I watch my life go by sitting on the sidelines, wishing for the day I can participate again and be a normal 23 year old.
So many who are sick are left searching for answers, for professionals who will help while being subject to bullying that in other aspects of life would be deemed unacceptable. Many others with a similar health status yet a different diagnosis would receive the support and resources required to make the journey as easy as possible. My family has all experienced the emotional and physical tolls, the sacrifices they have made just to give me the opportunity to fight. All this due to an illness that is a mystery to many, the psychological impact of which is now becoming just as debilitating as the illness itself. My question is that if this is not a Lyme like illness then there is something that is making so many sick, what is it?
Some words from Sarah that echo the sentiments of those living with Lyme & Co:
My life has been turned upside down; there isn’t a single aspect that has remained untouched. My independence, finances, freedom, friendships, career just to name a few. Since the age of twelve everything has been dictated by illness despite best attempts to stop it. I have been accused of putting it on, or making it up but what no one does see is the many tears that have been shed as I watch my life go by sitting on the sidelines, wishing for the day I can participate again and be a normal 23 year old.
So many who are sick are left searching for answers, for professionals who will help while being subject to bullying that in other aspects of life would be deemed unacceptable. Many others with a similar health status yet a different diagnosis would receive the support and resources required to make the journey as easy as possible. My family has all experienced the emotional and physical tolls, the sacrifices they have made just to give me the opportunity to fight. All this due to an illness that is a mystery to many, the psychological impact of which is now becoming just as debilitating as the illness itself. My question is that if this is not a Lyme like illness then there is something that is making so many sick, what is it?
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Wheelchair (Picture on Left) : MAY 2014 "I hadn’t left my hospital bed for a month, hadn’t been outside ..It may not seem like a long time however when you’re trapped in a bed unable to get out yourself, looking at the same four walls it feels like forever. The smile on my face was because I was finally getting a few minutes of fresh air when slowly wheeled to the hospital courtyard. Despite being in and out of hospital with illness for almost 9 years, it was from this moment on that the little things meant so much more than I ever imagined possible".
Standing (Picture on Right) : APRIL 2015 After travelling to Germany for Lyme & Co treatment - "First photo taken standing solo - May have been wobbly and I toppled backwards into the wheelchair after but its a start."
Sarah still has a long way to go to fully restore her health, but that opportunity is now there: made possible with a diagnosis and knowing what to treat.
Standing (Picture on Right) : APRIL 2015 After travelling to Germany for Lyme & Co treatment - "First photo taken standing solo - May have been wobbly and I toppled backwards into the wheelchair after but its a start."
Sarah still has a long way to go to fully restore her health, but that opportunity is now there: made possible with a diagnosis and knowing what to treat.
Before More Lives Are Devastated By Illness
If Lyme & Co were recognised, the infection could be treated early, and people would not have to lose years of their life to illness, progressively getting more and more unwell.
If Lyme & Co were recognised, the infection could be treated early, and people would not have to lose years of their life to illness, progressively getting more and more unwell.
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Janine Mieni: New South Wales. Age: 27. Sick since the age of 11.
My name is Janine Denise Mieni; I’m 27years old. I was bitten by a Tick on a Primary school camp in 1998. I have been suffering from debilitating symptoms for the past 18 years. Before getting sick I was an energetic, social and creative person and had a passion for dancing, singing & acting. The intermittent loss of feeling in my legs and seizures put an end to that. Throughout the 16 years before a proper diagnosis in 2014, I saw over 100 Doctors & Specialists, had numerous misdiagnoses & have presented to multiple Hospital Emergency Departments over 75 times. They didn’t have answers for me & ultimately blamed me & told me that my symptoms were Psychiatric & that there was “nothing wrong with you”, I was told, “Your subconscious is causing your seizures” & “You’re making yourself sick”. This treatment has left me mentally damaged & I have completely lost my sense of self & self-worth. I now finally have answers & I just want to be able to have access to proper care & treatment so I can live to my full potential again. I really just want my life back. |
Janine’s recount of her experience in reaching a diagnosis is sadly echoed by very many including Dave and Amara.
Dave Main: South Australia. Age: 39
Dave Main: South Australia. Age: 39
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Amara Campbell: Queensland. Age: 38
Amara has been sick for 15 years. She was initially diagnosed with ME/CFS in 2001 and by 2010 her health had deteriorated dramatically and she has been housebound ever since. Amara was diagnosed with Lyme & Co. 2013. If awareness and early diagnosis were available, the odds are, Amara’s health would not have had the chance to deteriorate so badly. She may even have achieved her dream of becoming a mum, and she certainly would not have lost so many years of her life due to illness.
More of Amara's story will be updated on the website in the near future. You can also read her blog "Life Like This"
Or Lost Forever
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Karl McManus: New South Wales: Age: 43
Bitten by tick July 2007, Northern Beaches, Diagnosed with Lyme & Co. 2008 From Mualla, Karl's wife: "Karl passed away suddenly on 14 July 2010 after catching the flu: due to the paralysis of his tongue, excessive mucus choked him. During the seven months prior to Karl's death we had managed to reverse his deterioration – he had gained15kg and his muscles had stopped twitching; and he was feeling positive as he could feel his body starting to repair and grow muscle. Karl's decline and death was due to his hospital admission and the medical system ignoring his condition and refusing to accept he had borreliosis and treat him accordingly". More of Karl's story can be seen on the Karl McManus Foundation Website |
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Theda Myint: Western Australia: Age: 37: Multiple tick bites WA.
Sick 14 years: Most of those years housebound: Diagnosed Lyme & Co. 2011 On the 25 July 2013, just one day after her last medical appointment, in which a neurologist advised her that she had tried all options available for pain management, Theda “euthanased” herself. For Theda, attending hospital was not an option as they didn’t believe she was really sick, and on her last admittance, the hospital staff had tied her down in a psych ward. In the words of her mother, Carol: Theda never lost her love of life; she simply became overwhelmed by the desire to escape her pain. More of Theda's story can be seen on the Lyme Australia Recognition & Awareness Website : Theda Myint July 2013 As well as this (GLiIO) website: Remembering Theda: 6 months on and Red Shoe Day : A Day of Remembrance |
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Bevan Jeffries: Western Australia: Age 44
Tick bite near Kojonup, WA. Over 6 years of illness: Diagnosed with Lyme & Co. 2014 Bevan was a very passionate person, a lover of classical music and an artist. After 6 years of illness, the constant battle with illness and the fear of perhaps never being able to overcome Lyme and return to a healthy life simply became too overwhelming for Bevan. He ended his health struggles on the 25th of February, 2015. More on Bevan's life will be updated on the website in the near future. Bevan's Mum, Pat also shared his story in a recent article in the Sunday Times magazine : The Brutal Bite of a Hidden Illness in Australia - Lyme Disease |
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Bryce Nettle: Western Australia: Age: 25:
Collapsed in 2009 due to ‘unknown’ illness: Diagnosed with Lyme & Co. 2014 
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From Michelle, Bryce’s mum: "Bryce was a very active young man who had a wide circle of friends and participated in a variety of sports from a young age - soccer, cricket, football, and surf club. By 14 he had an intense passion for body boarding, and surfed at every chance he could. Life changed in December 2009 when he collapsed. He was 19. Countless visits to doctors and hospitals, numerous tests and re-examinations and a plethora of treatments but none of these investigations provided a satisfactory.
Bryce’s mental state started to deteriorate a few weeks before his 25th birthday. He gradually became really down, very discouraged and anxious. He had been sick for six long years – one fifth of his life - and he’d started to doubt he would ever get better. On 17 November 2015, after years of illness, Bryce chose to end his suffering on his own terms". More on Bryce's life will be updated on the website in the near future. Some more of Bryce's story can also be seen in the article : The Brutal Bite of a Hidden Illness in Australia - Lyme Disease |
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Scott Chant: Queensland: Age: 32
Tick bite - Myocum NSW August 2012 Scott had a tick bite while doing some work on a Northern NSW property. He found a Lyme literate doctor after about 12months of not knowing was wrong after the tick bite. He gave up his fight on the 8th of February this year. I think about what led him to make that decision every day, but it is just obvious reading these stories. Scott was so debilitated he had to spend his day in bed, or in his fold out chair. It was never the life he envisaged or wanted to live. And I do blame the medical system in Australia. Yes there were those doing their best to help, and I thank those people every day because without them he wouldn’t have lasted three years, but when the time came that we needed that next step of help it wasn’t there. Hospital admissions often ended with Scott being sent home, and us, the family, being told that it is all in his head and to stop encouraging it. They were really rough nights and I do believe that if those experiences had been different Scott would be here right now speaking to you all and telling his story. For more about Scott, including his Senate Inquiry Submission see: Scott Chant 2016 on Lyme Australia Recognition & Awareness website, under the "Forever Remembered" section. |
Stand With Us
Help raise our voices to levels they cant ignore!
"Help us bring invisible into the light
So that no others have to suffer and fight
Tell our stories, believe our plight
Stand up with us and say, enough of the suffering - this just isn’t right"
Help raise our voices to levels they cant ignore!
"Help us bring invisible into the light
So that no others have to suffer and fight
Tell our stories, believe our plight
Stand up with us and say, enough of the suffering - this just isn’t right"
*Links to more in depth personal stories of all those featured above (and other Australians) will be added to this page as they are added to the website.
