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
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
In addition, the following Alice Springs stakeholders enthusiastically collaborated
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.
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.
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
Newsletter and site changes
Arguably one of the biggest recent changes revolves around our regular newsletter and changes to our site.
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.
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
Terry Jones, Michael Gill and Alexi Board
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.
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.
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:
Please Note that access to Literature Central is for Registered Members Only after they have logged in.
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.
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.
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
Scattered throughout the website are the following articles:
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 ProfileLeo 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.
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.
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.
Care about indigenous communities?
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:
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.
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.
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.
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