ABOUT Lyme Australia Recognition & Awareness (LARA)
The Author / Founder of Lyme Australia Recognition & Awareness
Karen Smith, B. Psych (Hons)
Karen founded LARA in July 2012. The majority of the research on the website was written by Karen (as illness allowed) throughout 2010-2012.
Links to various projects Karen has initiated / worked on are below. Further information about how the aims of LARA have been achieved can be seen at : LARA's Aims & Work
From Karen: Below is: A little about myself, how this website, and my advocating for the Recognition and Awareness of Lyme Borreliosis came about ; A link to more of "My Story" ; A link to the "Worldwide Lyme Awareness Project - Australia" website ; A link to the "Global Lyme & Invisible Illness Organisation" that I co-founded with US Lyme advocate Lisa Hilton in 2013.
Below also are a few thank-you's to the people who have made the last few years of my Lyme Journey that little bit easier. I have also shared a you-tube video of Lesley Rae Wermers. This was one of the very first video's that I watched when looking into Lyme. I will always remember it for the hope and inspiration it gave me when I was at beginning of my journey and just starting to learn of the complexities of Lyme.
Below also are a few thank-you's to the people who have made the last few years of my Lyme Journey that little bit easier. I have also shared a you-tube video of Lesley Rae Wermers. This was one of the very first video's that I watched when looking into Lyme. I will always remember it for the hope and inspiration it gave me when I was at beginning of my journey and just starting to learn of the complexities of Lyme.
A little about my journey and how this website and advocating for Lyme came to about:
I have always been the type of person that didn't know how to "sit still", with a typical day for me being active for 16-18 hours of each day. Then Lyme came along and decided things would be a little different, and that 16-18 hours a day was all of a sudden spent in bed. I am pleased to say that is no longer the case and I am on the road to recovery.
Whilst I try very hard to maintain a positive outlook on life, one thing I will share about my journey with Lyme disease is: Living with Lyme is sometimes not living at all; rather can only be described as a day to day "existence". There were many days where the limited energy and muscle strength I had meant that it was a choice between having a meal or having a shower. This existence is made to seem all the more futile as the denial of Lyme disease means you cannot get medical treatment because you live in a country where the presence of Lyme disease is denied. My own experiences, and seeing and hearing of the suffering of hundreds of people is why for me, advocacy for Lyme disease and speaking up for those that are too sick to talk for themselves is a must.
In order to have an outlet for my frustrations at the lack of awareness and widespread suffering that surrounds Lyme, on any day I was able to get out of bed, I worked on research into the Australian situation on Lyme, and as my health began to improve, I extended the patient support/advocacy work I had been doing by starting a Lyme forum to provide support to patients and families living with Lyme. Through doing this, I was not only able to channel my anger and feelings of frustrations and helplessness at that lack of recognition of Lyme, I was also able to feel a contributing member of society by being able to give support and hope to other people struggling with the maze of Lyme treatment and denial. Helping to organise, as well as participate in awareness and protest events, both in the national and international arena will be a part of my life until the needless suffering of thousands of people stops.
Whilst I try very hard to maintain a positive outlook on life, one thing I will share about my journey with Lyme disease is: Living with Lyme is sometimes not living at all; rather can only be described as a day to day "existence". There were many days where the limited energy and muscle strength I had meant that it was a choice between having a meal or having a shower. This existence is made to seem all the more futile as the denial of Lyme disease means you cannot get medical treatment because you live in a country where the presence of Lyme disease is denied. My own experiences, and seeing and hearing of the suffering of hundreds of people is why for me, advocacy for Lyme disease and speaking up for those that are too sick to talk for themselves is a must.
In order to have an outlet for my frustrations at the lack of awareness and widespread suffering that surrounds Lyme, on any day I was able to get out of bed, I worked on research into the Australian situation on Lyme, and as my health began to improve, I extended the patient support/advocacy work I had been doing by starting a Lyme forum to provide support to patients and families living with Lyme. Through doing this, I was not only able to channel my anger and feelings of frustrations and helplessness at that lack of recognition of Lyme, I was also able to feel a contributing member of society by being able to give support and hope to other people struggling with the maze of Lyme treatment and denial. Helping to organise, as well as participate in awareness and protest events, both in the national and international arena will be a part of my life until the needless suffering of thousands of people stops.
People living with Lyme (including myself) share their stories, not so people can feel sorry for us, but rather so that people can understand that Lyme disease can affect the lives of any average person/ family. By understanding this, I sincerly hope you are encouraged to read the other information provided on this website and join us in the fight to raise awareness and have Lyme disease recognised.
"My Story" (including a link to Today Tonight interview) can be seen under Lyme Patient Stories, Queensland Section, or follow the link here : Karen (Author/Founder).
A link to Global Lyme & Invisible Illness Organisation - Co-founded with United States Lyme Advocate Lisa Hilton. Aims to provide patients around the world with places they are able to get information and support, as well as establishing International Red Shoe Day.
A link to the Worldwide Lyme Awareness Project - Australia website - I started this website after signing Australia up for Participation in the Inaugural Worldwide Lyme Protest : The link will take you to the 2013 Events Round-up - which also gives a shout out to Janice Foster (who joined as National co-coordinator with me in November 2012), Sharon Whiteman / LDAA (who joined the WWLP - Australia team when we asked LDAA to sponsor the posters for the WWLP - Australia events in February 2013 ), and all the other wonderful advocates around Australia that joined in with the organisation of events to make Australia's participation in this inaugural event extremely successful.
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Leslie Rae Wermers
Iowa Lyme Memorial This video touched me deeply. Whilst it was sad, it was primarily very inspiring for me. It was sad to see for a few reasons:
* Because of the occasion (Lyme Memorial) * The loss of Leslie's health and life * At the time (early 2011) of watching this I could relate very strongly to her words: “This disease has taken every part of my identity, of who I was and everything I had accomplished in life” Primarily, for me, her overall message was Inspiring -
We have to be proactive, rather than reactive - only then can we help ourselves and others... |
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Thank you
First and foremost to my three children, Amber, Rhys and Ashleigh.
Not so much a thank a thank you, rather a dedication: They are my reason for fighting, my heart, my world xxx
Lyme disease has taken away a lot from them. They have seen their Mum go from a very active person, to someone who could not get out of bed. They have also had to deal with varying degrees of the illness themselves, and to try and understand that proper treatment can take a long time. From having a Mum that was pretty easy going to one constantly saying: watch what you eat, get enough sleep, etc, etc. It has been a bit of a culture shock for us all, but we have made it through :) My passion and drive to expose the government and the denial of Lyme disease in Australia is due to the fact that my children (and many other family members) have had their lives turned upside down by this illness and the continued denial of it existence in Australia.
I would also like to thank my girls for allowing me to share their stories: Ashleigh, for allowing me to display the picture of the bullseye (EM) rash she developed in 2002. Amber, to allow the picture of her full body rash (due to immune crash start of 2012) to be televised. I have been contacted by a few people that have recognised these rashes and were looking to understand their origins - So their courage to put themselves out there (which is hard to do even for some adults in this situation) in order to raise awareness of Lyme is already helping others.
Thank you also to : Amber, Rhys, and my folks, Brian and Biab - without whose financial support my treatment in the UK would not have been possible. Thanks very muchly everyone for helping me get back on the path to wellness xoxo
First and foremost to my three children, Amber, Rhys and Ashleigh.
Not so much a thank a thank you, rather a dedication: They are my reason for fighting, my heart, my world xxx
Lyme disease has taken away a lot from them. They have seen their Mum go from a very active person, to someone who could not get out of bed. They have also had to deal with varying degrees of the illness themselves, and to try and understand that proper treatment can take a long time. From having a Mum that was pretty easy going to one constantly saying: watch what you eat, get enough sleep, etc, etc. It has been a bit of a culture shock for us all, but we have made it through :) My passion and drive to expose the government and the denial of Lyme disease in Australia is due to the fact that my children (and many other family members) have had their lives turned upside down by this illness and the continued denial of it existence in Australia.
I would also like to thank my girls for allowing me to share their stories: Ashleigh, for allowing me to display the picture of the bullseye (EM) rash she developed in 2002. Amber, to allow the picture of her full body rash (due to immune crash start of 2012) to be televised. I have been contacted by a few people that have recognised these rashes and were looking to understand their origins - So their courage to put themselves out there (which is hard to do even for some adults in this situation) in order to raise awareness of Lyme is already helping others.
Thank you also to : Amber, Rhys, and my folks, Brian and Biab - without whose financial support my treatment in the UK would not have been possible. Thanks very muchly everyone for helping me get back on the path to wellness xoxo
A huge thank you also goes out to a special friend, Tony. Tony came into my life at the beginning of 2009, only a few months before I developed Bells Palsy and my downward health spiral began. Despite not knowing the "healthy" me for very long, Tony trusted in me enough to support me and not think I was crazy for trying to shout about the reality of the existence of Lyme disease in Australia. On the contrary, he took the time to learn about Lyme disease and despite the distance, he has been my primary support person for the last couple of years. With a sense of humour that surpasses my own, Tony was able to make me smile on days I would never have thought possible. As many with Lyme and other chronic diseases are aware: A positive attitude, smiling and laughter is a huge part of "getting through" each day. Especially with Lyme, when you are fighting not just for your health, but also for proper treatment. For always being there to listen, and for being my strength at the times my own ran out, I will be forever grateful. Love you truckloads crazy daft Brit xxx
