Dragon Claw Newsletter, December 2024

Dear Members,

Welcome to our final Dragon Talks Newsletter for 2024

We hope you are all enjoying this holiday season and now have the time to sit back and read about what has been happening with our important charity. We are taking this opportunity of keeping you informed about our various volunteer teams who are all amazingly dedicated to supporting the health and wellbeing of our members. We are all keen to keep working on our motto of “Encouraging self-care for those with autoimmune diseases”. If you are keen to help out with our volunteer work please contact This email address is being protected from spambots. You need JavaScript enabled to view it. and let us know your interests and skills.  There is always a spot vacant in our organisation! 

In addition to our usual updates on our Dragon Talks, Lupus Series and Caregiver’s Corner, Out and About photographs,  our member Dragon Annette Guterres AOM has critiqued an interesting book, What’s good for your Kids?, by Dr. Norman Swan.

Wishing  everyone a happy 2025 and look forward to catching up with you at our Dragon Talks either Tuesday pm (Canada/USA)which is Wednesday am Australia or Mondays 7pm Australia. Both Dragon Talks 1 and 2 are further detailed in this newsletter.. Have a look: some topics maybe of interest to you.

Yours in self-care,

Editorial team: Susan Hughes, Dr. Charmaine Jones, Anne Hughes, Alasdair and Susan Cook 

We are thrilled to introduce the newest members of our Board of Directors. They bring fresh perspectives, passion and expertise to help drive the growth of our charity to new heights. Together, this dedicated group is committed to creating meaningful change and providing vital support to those living with autoimmune conditions. Exciting times ahead!

Denis Tebbutt, our Board’s Chair, said “thank you to our existing dedicated and hardworking directors Alison Marshall, Treasurer, Susan Hughes, Chair of Patient and Carer Advisory Committee (PAC), Dr. Charmaine Jones and Andrew Thirlwell who all look forward to working with our very talented new members and warmly welcome them.”.

Chair of the PAC team Susan Hughes said “welcome to our new PAC member Fay Baudains of Western Australia and thank you to our dedicated and supportive current PAC team who meet quarterly and provide ongoing feedback to the Project Team and the Board” See PAC team here:

Our appreciation and acknowledgement to this hardworking team who partnered with research company, Community and Patient Preference Research (CaPPRe). The objective was to understand how patients make decisions about treatment and explore potential reasons for undertreatment (and how to close this medicine gap) in six autoimmune diseases (Rheumatoid Arthritis, Juvenile Idiopathic Arthritis, Atopic Dermatitis, Ankylosing Spondylitis, Ulcerative Colitis, Psoriatic Arthritis). We are grateful to Pfizer Australia for supporting this research. 

In our opinion thousands of patients in social media groups were not aware of their choices for targeted treatment and were needlessly suffering in pain and stress. They also appeared to be unaware of getting inflammation under control to avoid developing co-morbidities. This is the reason we were motivated to participate in a professional research project.

“It was a powerful experience integrating the knowledge and experience of our Patient voice with CaPPre, the patient focused research organisation” said dragon Susan Hughes.

Thank you to our Chair Denis Tebbutt for facilitating the Board endorsement of our final reports and our treasurer Alison Marshall for kindly uploading the financial remittance and restructuring the formatting of the reports in compliance with Pfizer requirements. It has been a strong, effective team effort.

Once our reports have been assessed by our sponsor we will be excited to share them with you, our members together with our patient partners and professional organisations.

Dragon Claw is proud to announce it has become a partner of the Genomics Coalition, along with 35 other patient organisations with the aim to advocate for equitable, community-led healthcare that integrates genomics into every day medical practice. About The Genomics Coalition: The Genomics Coalition envisions a future where every individual in Australia has equal opportunity to benefit from genomic healthcare, regardless of their disease, socio-economic status, or geographic location. Its mission is to leverage the power of genomics to prevent, diagnose, and treat diseases, ultimately improving the health outcomes of all Australians. It believes that patient organisation’s expertise in advocating for patients and the community is invaluable in supporting and shaping the Coalition’s initiatives and strategies.

The Genomics Coalition brings together patients, advocates, experts, and organisations to create a coordinated advocacy agenda for change. Its goal is to integrate genomics into the healthcare system to ensure equitable access and improve health outcomes across Australia. The Coalition will be patient and community-led and reflect achievements of the collective work aligned to the agreed policy asks of the community and patients it represents. The Genomics Coalition will work with its partners to advocate through media, Government Engagement and community education on the value of genomics, ensuring equitable access to the right genomic healthcare. 

Dragon Claw’s role as a Partner and the team members answer “Why I’m interested in Genomics”.

Dragon Claw’s role as a Partner 

The Coalition is designed to bring together a united voice for change with Dragon Claw and the other partners. It seeks Dragon Claw’s advocacy and support to help the Coalition achieve its vision of equitable genomic healthcare for all Australians.

As a Partner, Dragon Claw will play a role in providing insights and challenges from our community, based on our experience. Our contributions would help the Coalition to:

• Ensure policies and programs better meet the needs of the Australian population.
• Develop effective advocacy strategies to influence healthcare policy.
• Provide opportunities for our organisation to speak at Government and media events as agreed by us.

The Genomics Coalition will be patient-led, ensuring genomics is a community-led discussion. We and our organisation will be invited to Roundtable events, and the Coalition will keep us informed of relevant information, and advocacy efforts delivered by the Genomics Coalition as appropriate.  

The Dragon Genomics Team asked why they were interested in Genomics.

1. Alison Hope, Rheumatoid Arthritis Patient, Pharmacist & Education Professional.

My interest in Genomics:

When completing my pharmacy degree, genomics sparked my interest as part of my regular study, and I completed a placement at my university’s Institute of Health and Biomedical Innovation with my lecturer, which opened my eyes into what genomics is and how it can empower health professionals and their patients. Recently having a daughter has also caused me to consider what role genomics will play in her future (and beyond!).” 

2. Fay Baudains, Mixed Connective Tissue Disease patient, Nature Connection Educator and Mentor. 

 My interest in Genomics: 

Due to the rarity of my condition, I believe that genomics can play a large role in identifying others with rare conditions as well as create tailer-made treatments. I feel genomics will help health professionals view the patient as a unique whole and not just a collection of diagnoses or symptoms. 

3. Marilyn Hay, Ankylosing Spondylitis patient, Regional Director General, Human Resources Development Canada (retired.)

My interest in Genomics: I read, decades ago, that genetic testing could significantly improve patient wellbeing by enabling clarity on which medications/treatments would work better than others. Rather than having to undergo trial and error approaches, resulting in either no positive health impacts, or in suffering severe side effects while the presenting ‘condition’ only worsened pending correct diagnosis, people could be much better served.

4. Annette Heininger, Hashimoto’s Thyroiditis Patient, Lawyer. 

My interest in Genomics: With my background in law, governance, strategy and risk management I am interested in advocating to ensure people who undertake such testing are not adversely affected, disadvantaged or discriminated against by those who have a financial (or other) incentive to do so. I am passionate about knowledge-sharing and giving a lot more power to patients to help them better manage their own health and wellbeing. 

5. Dr. Charmaine Jones, Inflammatory Arthritis Patient, Physician (retired.)

My interest in Genomics: I’m keen to help move science forward and hopeful that one day genomics will provide much needed and anticipated personalized medical approach to autoimmune diseases.

By Dragon Dr. Charmaine Jones

Behind the Scenes at Dragon Claw is where the work gets done! Let’s pull back the curtain and take a peek! Our Board of Directors meets quarterly; however, so much more goes on between these meetings. Directors take on leadership roles on our projects. The Project Committee oversees these meetings twice a month. Dragon Anne Hughes prepares our agenda and does the minutes. I chair the meetings, yes, even when we are traveling! Here are some of the current projects we are busy with.

Closing the Medication Gap: Lead -Director Susan Hughes, Committee - Dr Charmaine Jones, Dr Alex McLeod, Maya Joshi from CaPPRe, funder: Pfizer

MPaCT (My Pain assessment Communication Tool); Leader Dragon and-Dr Charmaine Jones of Committee -of International patients with lived experience, funders: Canadian Pain Network (in kind) & Pfizer

Lupus Voices: A Parliamentary Friends event planned for Feb 2025, Lead - Susan Hughes Committee - Fay Baudains, Michelle Clewett, Andrew Thirlwell, Phil Godsmark, funders: AstraZeneca and Noxopharm.

Re Branding: Dragon Claw will soon be getting a brand new image/website/and logo! Stay tuned as MyFlareUP takes shape! Lead - Philip Godsmark, Committee - Directors & Alasdair Cook, Linda Gaudet

Dragon Talks 1 and 2 continue with our weekly education / support meetings.

Lead DT1: Charmaine Jones with Alasdair Cook

Lead DT2: Michelle Clewett recently joined by Fay Baudains

This is all completely voluntary by our facilitators and presenters.

I hope this provides a little insight into the behind the scenes work!

By Dragon Michelle Clewett

We have been privileged to hear from three more speakers as part of Dragon Claw's monthly lupus speaker series, sponsored by Astra Zeneca. These talks are delivered via zoom. There is no charge. Recordings are posted on our website (www.dragonclaw.net) as they become available.

In October, Estela Mata-Carcamo from charity Looms For Lupus spoke about how lupus has affected her family and shared her tips for how to build a trusting relationship with physicians in order to improve lupus management.

In November, lupus patient Zali McPherson spoke about the challenges of living with lupus as an invisible illness, how she has overcome difficulties to achieve success in study and work and pursuing her passions in life, and how she has used her lived experience to advocate for herself and others with lupus.

In December, we heard from Associate Professor Amanda Saracino, who is a consultant dermatologist with expertise in inflammatory and autoimmune conditions. A/Prof Saracino explained the different ways that lupus can affect the skin, and provided helpful advice about how to mitigate and manage the impacts.

We are grateful to all of our speakers for generously sharing their time and expertise.

Upcoming lupus presentations include:

• 20 January 2025 - The role of exercise in managing Lupus, with rheumatology physiotherapists Will Gregory (United Kingdom) and Dr Carol McCrumb (Australia).
• 24 February 2025 - Similarities and differences between Rheumatoid Arthritis and Lupus, presented by Creaky Joints Australia.
• 24 March 2025 - Potential new treatment for Cutaneous Lupus Erythematosus, with biotech company Noxopharm.

If you would like to attend these talks, please register via Dragon Claw's website (www.dragonclaw.net).

Most of the readers of this newsletter will have “little people” in their lives.  For us grandparents we know not to offer advice to their parents, especially new ones, or suggest that you really don’t need to buy a special thermometer to test the bathwater. So, when you are asked for advice and you really need to impress with your up -to -date knowledge of all things related to bringing up your grandchildren, it is necessary to have a good reference book.

Dr Norman Swan has published such a book titled ‘So you want to know What’s Good for Your Kids? ‘ It covers just about everything…food, crying , sleep, school, anxiety, screen time …..  The list is quite extensive.  And it is good commonsense advice. 

My advice is NOT to give it to the parents of the children…….it implies they do not know how to bring up your grandchildren.  Keep it there till the time is right.  They will come to you for advice at some stage. And then you could casually mention that you found this book.  If they then ask for your copy…great. If they are tearing their hair out because their little person is not sleeping or eating, they will welcome advice…. Even yours via Dr Swan’s book.

There is a chapter in the book called “The sins of the grandparents.”  One of his statements at the end of the chapter says that it is what happens after birth is more important than what happens during pregnancy.   

For myself (a retired teacher) with a keen interest in the areas of literacy and student success there are many references to the importance of vocabulary. The following certainly strikes the right chord with me.

A child’s oral language, their verbal skills, the number of words they know the meaning of, along with their general knowledge of the world around them, is the foundation of their future educational performance. And their literacy – the capacity to read and understand the written word and write – is, for most children the foundation of success in life.  Swan p248

You have made the plan to downsize and move, things are for sale on Marketplace, some things have gone to the Thrift / Recycle Store and some things to the dump, you have found a place to go, and then it happens.

Your Carer is coming out of the crawl space and taps their spine on the hatch, the pain is slow to develop, but by the next morning the pain is a 12 out of 10 and they are on their way with a neighbor to the Emergency department where an x-ray reveals either a trapped nerve or slipping disc at L4 and L5. Painkillers are dispensed and they are discharged and brought home, now, how to manage, what’s next?

Friends and the neighbourhood support group that you had built up are informed, and they spring into action, family members are too far away.

It is now that your patient partner starts to realize all the little things that you were doing automatically, filling the kettle, emptying the coffee pods, putting the toaster away, stacking the dishwasher, doing the laundry, shopping, the list goes on. It is not that your patient partner didn’t notice and appreciate these things, it is just that now the Carer can’t manage them, and as the patient partner steps up to do them it becomes clear that one can’t manage without some help. Now, neither of you can drive.

The friends and neighbours pitch in, they drive one to the medical appointments, they deliver food, they call and pick up the garbage and recycling, they call to check in and see how you are doing, you feel surrounded by people who really care and who obviously love you.

And so, you start to question your decision to move, you have lived here for years and built up this network of caring and loving friends and neighbours, it may take years to do the same in the new location, do you have those years to do it? Will you feel as secure?

As I said before, it is natural for us to want to stay put, safe and comfortable in our nest and surrounded by a comfortable routine and support network, but sometimes a move is forced on us by changing circumstances, your carer’s current situation has clearly showed you cannot manage the current situation without a lot of help, and so we must still shake our feathers and do something about it and try to continue with the Plan.

Meanwhile, keep to the Plan, keep smiling and striding into the future.

Tuesday pm ( Canada /USA)/Wednesday 10am AET (Australia)

Dragon Talks 1 on Tuesday evening (N American time) or Wednesday morning in Australia, continues and we are entering our 5th year of meeting weekly. Our membership fluctuates as folks come as they are interested in the topic, and are able. We continue to try to have interesting topics of relevance mixing in the opportunity to share as well.

We have had a mini-series on storytelling, and an introduction to shared decision making. We have heard from Stuart with scleroderma, and from the HUSH foundation - a group in Australia re-introducing kindness into health care. Dr Jean Campbell has given us an introduction to Chinese Medicine. Erin has introduced us to Service Dogs, including her best friend, Lexi. Julie Jones, founder and editor of the magazine Travel Without Limits has broadened our horizons of our travel ability. We will end our educational sessions with Dr Jan Tervaert, an award-winning Canadian rheumatologist, immunologist, and researcher speaking about Vitamin D. Finally, we will have a couple of sessions of fun, sharing old photos of ourselves in years past.

We have an exciting slate set up for the New Year.

We will start off the New Year with a review of our Pillars of Health. This is always a good reminder and reset for us as we enter 2025.

Jan 7/8 pillar review - a good way to start the New Year.

Jan 14/15 guest Dr Eric Schott with exciting research relating to our microbiome.

Jan 21/22 guest Amanda Lawrie-Jones will return speaking of workplace adjustments

Jan 28/29 will be our monthly “coffee/sharing” time

Feb 4/5 Carer’s meeting (anyone can attend)

Feb 11/12 guest  Dr Mayes and the Silver Tops will encourage us to “get up and dance”

Feb 18/19 Dragon Jenny Leslie on failed medical devices

Feb 25/26 A special - 90 minutes - with guest Moya Sayer-Jones on the art of story telling

March 4/5 guest Kathy Brabon, author of “Body Friend” - living with chronic pain

March 11/12 guest Lucy Mayes - a session on journaling/your narrative

March 18/19 guest Dean Minchington on the Pain Education app

March 25/26 our monthly “coffee/sharing” time.

Charmaine and Alasdair continue to facilitate our sessions. If there are topics you would like us to cover, please let us know.

Interested? please contact Charmaine, This email address is being protected from spambots. You need JavaScript enabled to view it.

Overview of DT2 and forward calendar

Thank you to our members and guest speakers for sharing their insights about how clinical trials work, shared decision making between patients and doctors, and workplace rights for people with disability. We also learned about clinical uses for charcoal, how to improve our memory, and heard a powerful personal story about the impacts of eczema.

Upcoming topics for Dragon Talks 2:

13 January 2025 - Self-care goals for 2025.

20 January 2025 - Lupus Speaker Series: The role of exercise in managing Lupus

27 January 2025 - No meeting (public holiday)

3 February 2025 - Impacts of thoughts on feelings and how to take control

10 February 2025 - The five second rule

17 February 2025 - How to get motivated ... even when you don't feel like it!

24 February 2025 - Lupus Speaker Series: Similarities and differences between Rheumatoid Arthritis and Lupus

3 March 2025 - How to communicate your autoimmune condition with confidence

Everyone is welcome. If you are interested in attending, please email: This email address is being protected from spambots. You need JavaScript enabled to view it.

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. 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

Eczema Support Australia https://www.eczemasupport.org.au