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Newsletter December 2019

 

Seasons's Greeting from Dragon Claw

Wishing you a Happy 2020


 

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Indigenous Video Project

The project has been completed and we have 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. 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 have been thrilled with the reception the video products have received: 

  • 90% positive response from clinicians
  • 100% positive response from indigenous viewers
  • Presentation to a major General Practitioner event in Darwin
  • Presentation to Medicines Australia in Canberra
  • An "excellent" response from the Federal Minister

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 or click on the next Picture to find out more

 

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New Website Content

Here are some example of the content we added since our last Newsletter.

  • A new video statement by our founder
  • Keys To Self Help located with the welcome video
  • Updates on Lupus, JIA and Sjogren's Syndrome under Quick Reads
  • RA and Frailty
  • RA and Exercise for the Brain
  • Dose Reductions and finally Cannabis also under Quick Reads
  • A detailed article on Vitamin D and Calcium
  • Update in Arthritis and food issues
  • Additions to Carer Central
  • RA and Fatigue in Exercise For You
  • A fun video about rheumatologists, Video Central, Things you can do now.
  • Media interview under Media Central

Just a quick reminder to Newsletter recipients who are not members that some of this content is only available to registered members.

 

 

 

Broken Heart Syndrome

If we ever needed proof that our mind, emotions and body are one, this is it! In 1990, the Japanese (Sato et al) named and documented the syndrome, not unknown to us in colloquial wisdom when we say “he died of a broken heart”. The left ventricle atrium balloons out and when seen on imaging, the Japanese thought it looked like an octopus trap - Takotsubo - hence the medical name Takosubo cardiomyopathy. The patient will look as if they were having an acute myocardial infarction (heart attack) with chest pain, EKG changes, and elevation of cardiac enzymes. Yet, the coronary vessels on imaging will be clear. It is not a heart attack.


The patient will likely have had a severe emotional or physical stressful event, such as the sudden death of a loved one, just before the onset. The thing is, with appropriate care, this cardiac condition is completely reversible 4-8 weeks. So, while we work with our clinicians on our physical issues (pain, joint swelling etc.) it behooves us to also pay attention to all the other facets of health and healing. All the facets of our health are important.


Charmaine Jones, Dragon Claw Canadian Ambassador

 

BrokenHeart

 

The PAC

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Susan Hughes would like to thank Dragon Claw’s Patient & Carer (PAC) team for contributing to and supporting her presentation on being an RA patient at Medicine Australia’s Pharma19 Conference held at Parliament House, Canberra. The conference was opened by Minister of Health the Hon. Greg Hunt and MC'd by Adam Spencer where Susan was the opening Guest Speaker to the audience of over 300 pharmaceutical professionals.

The PAC members including Rebecca Saunders (JIA patient), Andrew Thirwell (Lupus patient), Jill Berenson (RA patient), Michael Gill (RA patient), Amanda Collins (Lupus Carer) and Ned Strong (RA Carer) helped Susan to collectively understand the numerous challenges that affect our lives. They also collaborated in the preparation of her presentation which she felt was important to represent and raise the profile of Australia’s half million silent
sufferers of these often crippling diseases.

Susan covered the importance of patients developing ‘chutzpa’ and asserting themselves to self-care and to manage their painful diseases by developing relationships with virtual carers in the community, such as their family pharmacist, engaging with fellow sufferers either over a cuppa or online, mentorships, doing service for others by walking along side fellow suffers and reminding family and friends of their needs.

As she said, “We are often part of the majority of invisible disabilities where people don’t recognize our disabilities and therefore don’t understand how to support us.” She also talked about planning for travel adjustments like taking a mobile phone photo of our medical records and medications in case of emergencies, taking a copy of our mobility card, a small fold-up stool so when we find it too painful to stand or walk we have something to rest on. She also talked about the need to manage fatigue and having important rests periods to recharge our batteries.

She proudly showed the audience DC’s 5-minute Indigenous Medication Adherence video ‘Talkin Straight’ developed in English and 4 Indigenous languages to raise awareness of taking medications to treat their diseases.

Susan said, “My presentation on being an RA patient was well received because I had the support of my PAC team who really understands how we need to self-care our diseases”. She mentioned that the PAC team provided the supportive wind under her wings to raise awareness of our diseases at this important conference.

“After all thanks to Australia’s medications, clinicians and allied health we can enjoy good adjusted lives and hopefully in time so will our fellow remote community patients – the power of Patients helping fellow Patients is profoundly rewarding.” said Susan. If any members would also like to volunteer even in small ways please call contact This email address is being protected from spambots. You need JavaScript enabled to view it..

 

Volunteer Profile

My name is Jill Berensen, I'm married with 2 adult children and have had Rheumatoid Arthritis since 2003. I've also worked as a Registered Nurse for 45 years, specialising in Neurosurgery and Acute Spinal Injuries. Unfortunately my mum also had RA, so now my greatest fear is that one of my children will also develop symptoms.

Initially, it took about 3 or 4 months of consulting various specialists before being diagnosed. This was a very difficult time for me, restricted movement, incredible pain and unable to work. However, a great Rheumatologist and treatment, extended my working life by another 11 years, until pain and limited movement, saw an end to this. During the last 16 years I've incurred several complications of RA, like Pulmonary Emboli, Type 2 Diabetes, Chronic Anaemia and 2 years ago CLL (Chronic Lymphocytic Leukaemia). So, it has been wonderful to discover Dragon Claw and Susan Hughes recently, as I have felt quite isolated since
my mother died in 2013 and I don't know anyone else with this condition.

I really look forward to getting to know more people through this fantastic network.

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Picture Gallery

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Launch in Alice Springs of our Medication Adherence Video woth participating Elders, actors and partners including special guest Donna Ah Chee, CEO of Central Australian Aboriginal Congress hosted by Dragon Claw directors Denis Tebbutt and Terry Jones

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Dragon Claw's Canadian Ambassador Charmaine Jones (RA patient and retired physisian) heading out from home on her island in Ottawa

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Dragon Claw's Terry and Michael invited to attend the Minister's Panel

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Adam Spencer MC with Dragon Claw's Susan Hughes opening guest speaker about her RA story at Pharma 19 Conference, Parliament House, Canberra

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The Hon. Linda Burney MP said our Indigenous Video was "fantastic" at a meeting with Patient/Dragon Susan Hughes and Don Palmer the indigenous video director

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Lisa, Mike, Keith, Denis, Leo, Susan, Jill, Don,Shannon, and Chris at our December Christmas get together.

 

Media Exposure

PharmaGuild

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Dragon Claw's Indigenous video work was featured in the Pharmacy Guild of Australia's publication Forefront in November under

Culturally sesitive RA videos

A series of four indigenous language videos have been launched to encourage rheumatoid disease sufferers to take their medication on a regular basis.

You can read the full article HERE

 

 

New Financial Protocol Endorsed

Dragon Claw executives have developed and agreed to a set of financial principles as part of the governance of the charity. From our first day of operation we have been careful to manage all finances responsibly. The legal responsibility rests with the current executives. A summary of
what has been agreed is as follows:

  1. Dragon Claw is a volunteer organisation with registered membership.
  2. Projects requiring investment will be costed and detailed prior to commencement. In addition, as may be appropriate, members will be offered an opportunity to apply for work as a volunteer associated with the project. A typical example is developing our
    website as a set of steps requiring upgrade projects over the year.
  3. Where skilled member interest is insufficient or does not meet the task description the Executive may outsource the tasks or may opt to carry out the duties themselves as volunteers.
  4. All grant money is linked to specific projects and a detailed proposal agreed to by the granting organisation and Dragon Claw.

The charity maintains fully detailed ledgers and accounts which are open to registered members, sponsors and supporters to view. All cash and payments are reconciled with bank account transfers.

 

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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