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Newsletter August 2019

Indigenous Video Project

The project has almost been completed and we have already produced five health outreach videos about taking RA and lupus medications consistently and correctly. Each video is set in and around Central Australia and are in four local languages plus English. Indigenous concepts of health are not the same as western concepts. For them health is not primarlily an individual condition but one closely tied to their skin community and to their country. The videos emphasise community and country visually and via a number of references such as the ability participate in ceremonies.

A significant issue has been the lack of medication compliance. While not unique to indigenous peoples, many patients stop taking their medications once they start to feel better thereby inviting flares and other problems. Currently there are almost no RA and lupus support resources for indigenous patients in Central Australia. Our small contribution will be available to all clinicians to show their patients, will be shown in clinic waiting rooms and will be available for download by any person free of charge. We hope that these videos spread across rural and remote Australia as a worthwhile resource. This video is spoken in four indigenous languages; Arrernte, Luritja, Walpiri, Pitjantjatjara in keeping with the United Nations Year of Languages as well as English.

Visit First Australians by Clicking on the next Picture

 

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Our approach was developed as a result of one of our members, Natasha identifying the need to communicate culturally the importance of taking prescribed medications.

This grass roots approach was enthusiastically funded by

  • the Federal Government through the Indigenous Health Department, under the leadership of the Hon. Minister Ken Wyatt MP
  • the support of our partners, Janssen Australia.

In addition, the following Alice Springs stakeholders enthusiastically collaborated

  • Central Australian Aboriginal Congress
  • Alice Springs Hospital Rheumatology Department
  • The Poche Centre
  • Central Australian Aboriginal Media Association (CAAMA).

In addition, the local community engaged to ensure that their culture and lifestyle formed the basis of good health and the value of medications adherence.

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The making of these videos has been great fun, especially working with award winning film director Don Palmer and Little Dog Productions. If you would like a preview, visit the Dragon Claw home page and scroll down to our short documentary video. We could not have completed this project without a wonderful seed donation from Janssen Australia and a grant from the Federal Department of Health.

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New Developments

Logo Changes

You may have noticed that the logo on the website and on the header of this newsletter has changed. It has been updated and modernized based on feedback from a number of members and supporters.

At your Rheumatologists

We are sending out to all rheumatologists a small stand-up cardboard stand all about Dragon Claw

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 Newsletter and site changes

Arguably one of the biggest recent changes revolves around our regular newsletter and changes to our site.

  • To meet privacy legislation around the world you will now be able to unsubscribe from the Newsletter while remaining a valuable member of the Dragonclaw Community
  • While we distributed 33 editions of our newsletter in PDF format, we have decided to distribute all future Newsletters in a more commonly available and accessible format.
  • We have changed the look and feel of the site to incorporate the suggestions we received from members. To encourage member participation you will now see the member forum after you have logged in
  • These above changes are a work in progress and we appreciate any feedback, preferable via the Forum.

 

International RA Week

Interview in Coffs Harbour

During International RA Week our chair Denis Tebbutt Denis was interviewed on Mid North Coast via ABC radio. With his RA patient contact Lorraine they are working on developing a local group of Patients and Carers in Coffs Harbour. He is also reaching to his community around Coffs Harbour to establish a group of patients and carers to support each other about self-care.

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Denis with Lorraine Penn from Coffs Harbour

Interview in Sydney

Michael Gill, Susan Hughes and Dragon Claw’s new Marketind Director Terry Jones were interviewed for Small Biz Matters by Alexi Board on the business of managing a charity and having the passion to volunteer, using past professional skills and experience to make a
difference. This podcast has been shared on DC’s LinkedIn and can be found on our website under Media Central.

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Terry Jones, Michael Gill and Alexi Board

The PAC

PAC Introduction

The Patient Advisory Committee is the patient's voice is charged with representing the patient viewpoint in all major Dragon Claw projects. Such projects relate to branding, public relations and marketing including website content.  As time goes on we will seek to establish a PAC group in all major Dragon Claw geographies. Currently we are planning for the USA and UK.

We would like to welcome our new Patient Advisory Committee (PAC) member Charlotte Hill, a nutritional therapist. Charlotte has a great national athlete story to tell and the way she recovered with her crippling disease by learning to eat the right food to lead a happy healthier life. She will be writing nutritional awareness articles and plans on conducing a pilot 4-week support group with the PAC team. We all look forward to learning from Charlotte. The other PAC members include Amanda, Andrew, Bec, Ned in Sydney and Annette in Alice Springs. Susan Hughes chairs the meetings.

Charlotte's story

Hello, I am Charlotte Hill, a Nutritional Therapy Practitioner. I’ve had ankylosing spondylitis since 2004 when I was 18. As a result of transforming my own health through diet and lifestyle changes, I now work with others who struggle with their health to support them in re-balancing their body and help them live a life they love.  Ankylosing spondylitis is an autoimmune condition which impacts the spine and when first diagnosed I was an international England lacrosse player who dreamed of playing in a World Cup. With the progression and unpredictability of my condition I had to give up my childhood dream and many other things I loved.  However, my life changed in 2012 when I changed my diet by removing gluten and adding nutrient dense ingredients to support my gut health. I have never looked back. I now manage my condition proactively through diet and lifestyle changes and I cannot believe the difference it makes. I also still work with a rheumatologist to monitor my condition.  Changing my diet, turned around not only my health but also my life. I love what I do as a Nutritional Therapy Practitioner and also as an Instructor for the Nutritional Therapy Association. I cannot wait to be a part of this community going towards.


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Charlotte and Armanda

Great New Content

Member Only Area

To celebrate our new website, a large basket of new content has been prepared and installed. Scan the following, dash in to the website and have a look. Under Literature Central you will find these titles:

  • Great Progress for JIA People
  • Lung Disease in RA: Which Factors are Linked With Mortality?
  • New Drug - An Update on Prednisone
  • Abatacept – what is the safety profile in rheumatoid arthritis treatment?
  • Certain Drugs Increase or Reduce Fracture Risk in Rheumatoid Arthritis

Please Note that access to Literature Central is for Registered Members Only after they have logged in.

Featured Video

An excellent  new video has been added under ‘Dragon Conversation’ with rheumatologist Dr Daniel Lewis. This 15 minute video addresses a whole range of issues you are afraid to ask your specialist.

Here to Help -- then Dragon Conversations -- then scroll down.  Easy!

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New Indigenous Section

We have added an entire new section called First Australians. Indigenous people have rates of RA and lupus about 40% higher than the general national population. Dragon Claw has spent eight months working to develop videos for Central Australian indigenous people focusing on medication adherence i.e. take your tablets. Under this menu item you can view the video in English and in four indigenous languages. In addition, you will see two videos dealing with how we actually went about the project. We believe that this project - local indigenous language based health outreach videos for RA and lupus - is a world first. Have a look.

Featured Articles

On the Home Page is a section which will contains featured articles, which are updated at least weekly, so please go to the Home page regularly

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More content

Scattered throughout the website are the following articles:

  • Prevotella copri in individuals at risk for rheumatoid arthritis (Quick Reads)
  • Sleep is Essential for People with RA (Home Page)
  • Vitamin D Supplements Fail (Nutrition)
  • The Mediterranean Diet - Again! (Nutrition)
  • Patients and Doctors - Observations by a Doctor (Quick Reads)

If you are a registered member just use the Search Function on the Home Page to find material. There is a lot of interesting new content but if you would like something about a special topic just contact us or head to the Forum Section.

Volunteer Profile

Leo has been with us for about four years and is responsible for all things IT. He has kindly donated his time for our second website release and now our third, the current one. Leo spends around 4 hours a week. He was CIO for a number of organizations before deciding to explore other things like Dragon Claw. He meets with our founder once or twice a month to resolve technical issues and to plan our IT future.
LeoPic

Food for Thought

It has always been on my mind and a passion that almost became my profession, I get a great deal of pleasure from cooking and entertaining, I think it has been the most talked about topic that I can recall throughout my lifetime with television channels now dedicated to food. There is much written on the role that food plays in our bodies and in particular the way that our bodies process different foods and the effect they have on our immune system. Now there appears to be a link between the immune system, its role in causing pain and its association with the brain.  So last year when I learnt from a friend in the UK about some leading edge research at York University that could identify the foods your immune system just didn’t like I decided to take the test.


It was with a certain level of apprehension as I really wasn’t sure that I wanted to know what I shouldn’t eat or drink. With the members of Dragon Claw in my mind I took the test to see what it would reveal and also to test the impact of changing my food balance. Well I was expecting the worse; you know that fear, I have paid good money for this and now I am about to learn that I should give up wine or hot crusty bread, prosciutto or some of the many other foods that bring back such found memories of countries I have visited and foods that I enjoy cooking-this was a foolish thing to do. Well you have probably heard the expression that you should “Go to work on an egg,” great advertising campaign in the 60’s and I lived up to it with a passion. Fried, scrambled, boiled, poached-you name it and I would eat them anyway and especially egg custard tarts with my coffee.  would try all and every type. Well the test said that it was the egg white that my immune system disliked the most, followed by the egg yoke. There was not another tick against the 300 or so items tested - relief, its only eggs!

So in February 2018 I gave up eggs; after two weeks I had lost the appetite for them and even though I continue to cook them our loving relationship has diminished, I just don’t need them anymore in my diet.  So what difference did this change make? Absolutely none during the first year, but I kept going because I had read about clinical research in France that showed distinct change may not be recognizable for some time between one and two years. That’s how long it can take for years of intolerance to recover from.

After a lifetime of discomfort and concern, the connection between an irritating dry skin condition, diagnosed as eczema and my love for eggs seems related as there have not been any other changes during this period. Being divorced from eggs is not such a bad thing knowing that there was no clinical cure and no knowledge of what was causing this problem over the years.  Lets face it there are now so many foods available that we have a choice about what we eat and drink, so why not recast what works for you and choose the foods that work for you, not against you.

Getting some advice on food and building a new lifestyle is a personal challenge but can also give you something back in return. We are beginning to unravel the true connection between our individual bodies and what fuel they prefer, it seems we can run on a leaner balance and in turn the body will respond while your medications are helping you to cope with the symptoms.

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Denis

 

Care about indigenous communities?

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We have been working in Central Australia. The rate of painful debilitating rheumatoid arthritis amongst indigenous people is 40% higher than the general population. That is huge and ruins their quality of life. For all the indigenous people in Central Australia we have produced five beautiful videos as a health outreach program focused on ‘taking your tablets’. A simple message but many people still fail to complete or continue with their medication prescriptions.

You can view the video HERE:


We want to reach all the other major indigenous groups across the ‘top end’ of Australia to help communities manage the condition better. We urgently need additional funds to make this happen and would be delighted if you were either make a donation or a provision in your will.


Simply go to Donations


Dragon Claw Charity is a national registered charity run by patients for patients. Thank you.

Bush Telegraph

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Donations

Dragon Claw is run by volunteers.  None get paid so we use all funds for projects and our overheads are very low.  Membership is free.  We’d love you to become a monthly donor, which helps ensure a predictable steady stream of support. Notify us of your proposed donation HERE and we’ll prepare a tax-deductible receipt.

Volunteers Needed

Dragon  Claw  Charity  Ltd  is  a  fully  registered  Australian  charity and  operates  in  the health  promotion  space.    We  focus  exclusively on  rheumatoid  arthritis  and  lupus.    Due  to  rapid  growth  and increasing   opportunity   we   are   seeking   two   people   to   fill   the positions  of  Executive,  joining  the  founding  three.    The  executive team  manages the organization with the support of a formal Board and  a  number  of  advisory  groups.    If  you  are  interested  to  make  a difference,  can  focus, deliver  on  agreed  outcomes  and  have  the ability  to  donate about 10  hours  per  week,  then  please  consider Dragon Claw.  These two positions are entirely volunteer as are all positions.  Please visit our Website and if we pique your interest then send a one page application to the founder Michael Gill (This email address is being protected from spambots. You need JavaScript enabled to view it.).

Aim

DragonClaw provides information, community and support.

Why the name?

Rheumatoid Disease (RD) can be felt like an unpleasant animal moving around the body biting and scratching.

Occasionally,the dragon rears up and breathes fire,which is felt as a flare, hence the name.

Our Patron

Dr. Mukesh Haikerwal AO former National President of the Australian Medical Association. He is currently a board member of Beyond Blue, Cancer Victoria and Brain Injury Australia. In addition, he is a professor at the School of Medicine, Flinders University, Adelaide. Encouraging self-care and care co-ordination to reduce isolation and stress.

 

 

Disclaimer: The Site and the content and services made available on the website are provided on an "as is" and "as available" basis. Dragon Claw does not make and disclaims all express and implied warranties and representations, including, but not limited to, any implied warranty of fitness for a particular purpose, with regard to the Site, the Site content, or any advice or services provided through the Site to the extent permitted by law. Dragon Claw does not warrant that access to the Site or its content or services will be uninterrupted or error-free or that defects in the Site will be corrected. The advice, recommendations, information, and conclusions posted or emailed by other members of the Site may not in any way be vetted, approved or endorsed by Dragon Claw, and you use such information at your own risk

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