WELCOME.
Welcome to the March 2024 edition of our quarterly newsletter.
It was an eventful quarter for Dragon Claw; we were well represented at the 2024 Australian Pharmacy Professional conference held on the Gold Coast, the Pfizer sponsored research with CaPPRe was initiated, and a special series on Lupus is being planned.
During this recent trip to Australia, Charmaine made a point of catching up with our founder, Michael Gill. As well as our regular features of Carer’s corner, Dragon Talks’ summaries and future schedules, we feature some members’ activities.
If you haven’t already done so, please go to our website, www.dragonclaw.net and sign up for our newsletters, it will be quick and easy!
Your editorial team in Australia; Susan Hughes and Robin Murray, and in Canada; Charmaine Jones, Linda Gaudet and Alasdair Cook.
SEEKING SOCIAL MEDIA VOLUNTEER.
A request to our members: we are seeking a volunteer interested in helping us with social media posts. Please email
Upcoming Lupus Speaker Series.
Starting on World Lupus Day, 10 May 2024, Dragon Claw is proud to be hosting a speaker series focusing on Lupus. Affecting around 1 in 1,000 people, Lupus is a complex and often debilitating autoimmune condition affecting organs and joints.
The Lupus Speaker Series will include a variety of patient stories and Lupus specific topics to help raise awareness and understanding of Lupus, its impacts, and management strategies. The Lupus sessions will occur roughly once a month, as part of the Australian Dragon Talks. (Monday evenings).
Details will be published in upcoming newsletters and circulated to Dragon Talk participants via email. Even though the topics will have a Lupus focus, they will also have broader relevance to other autoimmune inflammatory conditions, and therefore all Dragons and interested others are welcome and encouraged to attend.
Michelle Clewett, Dragon Talks Facilitator, Lupus Patient
Out and About.
Melbourne Dragons Rachel Lea and Jan Frazer recently caught up for a cuppa, supporting each other "down under." We are giving a copy of Rachel's book "Lupus = Lift Up, Persevere, Use Strength: A Lupus Warrior's Story of Hope, Spirit and Fortitude" to our speakers at the Lupus Series.
Sydney Dragons meet up at Balmoral Beach, early autumn. L-R: Swinder Pigot, Jenny Leslie, Dr. Robin Murray, Susan Hughes, and Dale Amir.
Dragon friends l-r front row: Monika Boogs & Guilia Jones of Pain Aust., Stephen Mason of Aust. Pain Assoc. Back row l-r: Dragons Susan and Denis.
Meeting in person our dragon volunteer of Dragon Talks our Queensland Dragon Ali Hope (centre) and youngest dragon baby Elsie. L-R: Dragons Susan, Rudy & Jackie.
Dragon Susan Hughes attended a Patient Centred Research Workshop presented by CaPPRe Research and Patient Voice Initiative. L-R: Laurie Axford, M.D. CaPPRe, Susan Hughes, Maya Jones, CaPPRe
Cheryl (right) with her teacher (left)
Cheryl’s daughter Michelle and Cheryl’s mother
Art piece by Cheryl
Thriving over Surviving.
Spotlight on Dragon Claw’s Founder, Michael Gill, pictured with Charmaine.
By Dr. Charmaine Jones
10 years ago, Michael had an idea. He also had severe RA.
Wondering what he might do to settle the raging inflammation that had been diagnosed as RA in 2011, Michael started researching. He soon realised that he was learning a great deal that wasn’t touched on during his medical appointments.
He had an idea: he would start a website for others suffering from the “dragon’s claw”. He gathered some friends, who remain on our executive, and started to share information on a web-based platform. Dragon Claw was born and registered as Dragon Claw Charity Ltd (Australia) in 2017. He chose the name to describe the pain during a flare of inflammation in his joints.
Since retiring from the Board of Directors, Michael has continued to thrive. Charmaine had the opportunity to meet up with him at his Sydney home in November 2023. Michael loves gardening. His yard is a lush retreat from city life.
His RA continues to be well controlled on a biologic and he has researched a small portable fridge for the injections. (https://lifeina.com.au) to enable him to continue traveling.
Michael keeps moving: he cycles 100 km each week and also finds time to express his artistic side making films. He is an advanced amateur digital filmmaker - https://filmfreeway.com/MichaelGill. You can view one of his latest award winning videos - Dyarubbin - on www.vimeo.com.
In addition to his cycling, film making, and traveling, Michael remains up to date on all things related to RA and he continues to be involved with OMERACT. (https://omeract.org). (OMERACT is a global, volunteer-driven, not for profit organisation committed to improving outcomes for patients with autoimmune and musculoskeletal diseases through advancing the design and quality of clinical studies.)
Michael continues to have a session with 3rd year medical students who gather at Liverpool Hospital where he reviews RA from a patient’s perspective. He includes what he has learned regarding the impacts of lifestyle.
Thank you, Michael, for starting Dragon Claw: what a great initiative!
Rheumatology Clinical Care Standards.
The Australian Rheumatology Association (ARA) in collaboration with a specialised Clinical and Patient team developed the nation’s first Clinical Care Standards for Rheumatoid Arthritis. Dragon Claw was invited by ARA to provide feedback and endorsement of these standards.
A team from our Australian Patients & Carer Advisory Committee read these standards and gave feedback. We noted that with Australia having a shortfall of 300 rheumatologists, some of these standards were aspirational. However, importantly, we found it very positive and encouraging that these standards were documented, providing a level of care that we can work towards.
Pic l-r: Susan Cook retired Prof. de Français, MS patient with husband/caregiver Alasdair Cook, retired aeronautical engineer, Canada, and Millicent– woof!
CARERS SUPPORT CORNER.
By Dragon Alasdair Cook
Partner’s Support Corner.
During the open discussion period, members shared tips on safety within their home environments, some alert devices, and the importance of building relationships and a support network including friends and health professionals.
As you ponder your individual situations, keep smiling and striding into the future, all the while taking care of yourself, your partner and your own physical and mental health.
Family Medicine Summit 2024
Dragon Director Dr Charmaine Jones and Linda Wilhelm, president of Canadian Arthritis Patient Alliance presented our new resource “Know Your Numbers & Trends: A tool for patients with Autoimmune Disease” to Ontario Family Physicians.
Dragon Talks 1 Australia/North America
Summary of DT1 for the last quarter
Dragon Talks have continued to expand, welcoming new members and to explore and share.
We started off 2024 by choosing a word or phrase to hold close and guide us throughout the year. This was followed by a quick review of our health pillars including a self-assessment tool to help us choose a lifestyle area where we felt we might put a little more effort this year.
We continue to build in quarterly sessions on mindfulness.
Deborah Edwards shared her knowledge of Ayurvedic medicine with us - a new a foreign paradigm for some.
Sarah Comensoli shared why we should all be incorporating resistance training into our days.
Our second carer’s panel focused on living alone with an autoimmune condition and really highlighted the benefits of our sessions and the friendships formed across the miles.
We had a session on positive outlook by Diana Foglia (PositiviDee) who has used her diagnosis of MS to re-evaluate her life’s values.
We then turned our attention to learning more about sleep: how is sleep monitored in the lab and what does it mean. This was an excellent addendum by Dr Helen Driver to our first session on Sleep aids by Dr Judith Richardson.
Several of these sessions will be uploaded under their relevant pillar on our website - have a look!
Alasdair and Charmaine have an exciting line up for our next quarter!
Dragon Talks 1 Upcoming Events
Tuesday Evenings Canada and Wednesday 10am Australia.
DT1 schedule - always subject to change and notified every week! Watch for the weekly email
Schedule April through June
April 9/10: Dragon Rachel POTS
April 1617: Mindfulness
April 23/24: Dragon Jill Type 1 Diabetes
April 30/May 1: Sharing
May 7/8: Dragon Jackie and elephants!
May 14/15: Dragon Dale on Focusing
May 21/22: Dragon Kathryn’s story
May 28/29: Sharing
June 4/5: guest: Dr Rachelle Buchbinder on medicinal cannabis
June 11/12: Dragon Michelle on Fun.
June 18/19: Guest Dr Veronique Mead on Trauma Part 1
June 25/26: Guest Dr Veronique Mead on Trauma Part 2
Enquiries to attend email Charmaine Jones
Dragon Talks 2 Aussies 7pm Mondays
Summary of DT2 for the last quarter
Dragon Talks (Australia) kicked off in earnest on 15 January with an impactful presentation from mother and daughter, Lorna and Barbara, who shared their experience navigating numerous chronic and complex health conditions. The love and care they showed for each other was moving, as was their courage, pragmatism, and ability to find the funny side of just about anything!
We have also shared our self-care goals for 2024, explored the health benefits of having fun, and identified how Dragon Claw members could contribute to a review of how health technology assessments are undertaken by the Australian Government which influences our access to health technologies such as medical tests, medicines, and procedures.
Dragon Talks 2 Upcoming Events
(Schedule is subject to change)
11 March - Tattoos and Autoimmune Inflammatory Conditions
18 March - How to Improve Your Memory
25 March - Self-Care Plans for Muscle, Bone and Joint Conditions
1 April - No meeting (Easter Monday).
8 April - How to Say No
15 April - Travel Adjustments for People Living with a Disability
29 April - Self-Care Pillars Revisited
6 May - Scleroderma Patient Story
Dragon Talks Enquiries please contact
Help Lines
National Help Lines with Muscular Skeletal Org, Arthritis Australia and Crohn’s and Colitis Aust. 
Our friends at Musculoskeletal Australia, (MSK), provide a contact free national Help Line! Do you have questions about dealing with pain, your musculoskeletal condition/s, treatment options, COVID-19, or accessing services? Then be sure to call their nurses on their free Help Line. They’re available weekdays between 9am-5pm on 1800 263 265 
Call the toll-free national Arthritis Infoline on 1800 011 041 for information about arthritis and other musculoskeletal conditions including self-management, community programs, seminars, support groups, and other resources. The Arthritis Infoline is staffed by health professionals and specially trained volunteers in your state or territory who can answer most questions about living with arthritis. 
For our 100,000 friends with Crohn’s and Colitis Disease – crohnsandcolitis.org.au,
National helpline 1800 138 029
https://crohnsandcolitis.ca/Support-for-You/Gutsy-support
Canadian links: https://arthritis.ca/support-education/support-resources/arthritis-lin
Canadian Arthritis Patient Alliance CAPA https://arthritispatient.ca
www.painaustralia.org.au
Chronic Pain Aust. 1300 340 357 https://painmanagement.org.au/service