Dragon Claw Newsletter June 2024

WELCOME

By Dragon Susan Hughes,

Hello to our friends in winter-brisk Australia and balmy warm summer North America.

In this edition, we are proudly sharing just a few of the busy activities on which our dedicated volunteers have been working. These activities are aimed at encouraging self-care for our patients with autoimmune diseases, their caregivers and supporters. The activities include participation at the Australian Professional Pharmacist Conference on the Gold Coast and, across ‘the ditch’ (Tasman Sea), participation at the Australian Rheumatology and NZ Rheumatology Conference held over 4 days in Christchurch. 

Meanwhile, Jackie Morris and Michelle Clewett represented our charity at the Australian Patient Advocacy Alliance Summit in Canberra; Susan Hughes attended the Patient Centred Research Workshop in Canberra; and, Michelle attended the Monash University Lupus Clinic event in Melbourne. Alison Marshall accompanied Susan Hughes to the Pinnacles of Pain Awards presentation at NSW Parliament House co-hosted by Pain Australia.  

Check out our Thriving Over Surviving story about our volunteer, Dragon Jackie Morris, who enjoys an inspiring life while managing Rheumatoid Disease since her diagnosis 40 years ago.

Congratulations to our dragon Dr. Charmaine who celebrated her 50th anniversary reunion of Medical Education.

Alasdair has experienced a few unexpected challenges to his generally organised days which has inspired his Caregivers Corner story in this publication. If you have any caregiver stories, please feel free to email Alasdair at This email address is being protected from spambots. You need JavaScript enabled to view it..

Lots more in this action-packed edition, so kick back over a cuppa and enjoy! 

Editorial team Charmaine, Alasdair, Susan & Anne.

Dragon Claw has been hosting a monthly speaker series focusing on Lupus, kindly sponsored by AstraZeneca.  In celebration of World Lupus Day and Kidney Action Week, our first presentation focused on lupus and kidney health. This talk was given by Stephen Cornish - Community Engagement Manager at Kidney Health Australia who talked about how we can care for our kidneys, and Amanda Sluiter who shared her experience living with lupus nephritis (a type of kidney disease caused by lupus) and undergoing a kidney transplant. A recording of this video has been posted on our website under new tab “Lupus Series” in the Medical Matters section at this link..

Our second presentation in June was by Lupus patient / Founding Board Director of Dragon Claw, Andrew Thirlwell, who has been living with Systemic Lupus Erythematosus (SLE) for 17 years. SLE is often represented as a female only condition, but one in ten SLE patients are men. Andrew talked about the difficulties he experienced in reaching a diagnosis, and his positive approach to managing the disease. A recording of Andrew’s presentation will be published on our website shortly.  

Upcoming topics include -

• Haematology (blood) problems in lupus and other autoimmune conditions on 1 July; 
• How medicines are made available via the Pharmaceutical Benefits Scheme (including the new biologic medicine for lupus) on 5 August; and,
• on 11 September keynote speaker Professor Eric Morand, Head of Rheumatology at Monash Health will speak about an upcoming clinical trial to further explore the gene that may have a casual impact on some cases of Lupus.
• These special talks will be continuing for the year at approximately one a month.

We are pleased with the positive feedback about the topics and speakers received so far. The lupus series is free to attend, and all are welcome. To register to attend the series, please email - This email address is being protected from spambots. You need JavaScript enabled to view it.

Dragon Claw Charity was delighted to be invited by the ARA to this conference held at Christchurch NZ where our Patient ambassadors Dragons Jan Frazer of Melbourne and Susan Hughes of Sydney managed an information stand over 4 days. Susan said, “this was an important opportunity for us to liaise with rheumatologists and associated health professionals where we could talk about our work, especially our ARA endorsed “Know Your Numbers” (KYN) patient resource (Know Your Numbers webpage). We also handed out invitations for their patients to attend our new Lupus Series of presentations (sponsored by AstraZeneca). These are held monthly and provide professional educational presentations by clinicians and Lupus patients. Many thanks to volunteer Dragon Jan Frazer who took to managing a stand and customer / sales service like a ‘duck to water’.

By Dragon Chair Denis Tebbutt

Front: l-r Monika Boogs & Giulia Jones, Pain Aust., Murray Brown Aust. Patients Assoc.

Back: Dragon Claw Directors Susan Hughes & Denis Tebbutt (Chair)

Supported by our volunteers, Dragons Jackie Morris and Rudy Rudhran, Susan Hughes and Denis Tebbutt staffed a booth at the Australian Pharmacy Professional Conference and Exhibition held on the Gold Coast from 14-18^th April.  Our aim has always been to spread the knowledge of all the excellent work our community of common interest does to support those diagnosed with Autoimmune Inflammatory Diseases and with the successful development and launching of the new tool ‘Know Your Numbers’ (KYN). The Pharmacy Guild reached out to us and offered a free booth between the conference and the main exhibition.

The conference has more than 5,000 delegates from across Australia and supports their professional development with a very comprehensive program of events to suit all levels of knowledge and experience.  Growth over the past five years of the key role that pharmacists play in the health system is recognised within our community as they are the most visited point of contact and support for maintaining our health.  The KYN tool is available for pharmacists to use and advise their customers about how to use it and  access support through the services we provide as a community.

During our time at the conference, we had the opportunity to meet with colleagues from The Australian Patient Alliance and Pain Australia.  Collaborating with these significant and experienced groups is core to our activities as we share many common objectives and will work together to help our communities as they look to manage their health conditions and navigate the health system to their advantage.

With such a large exhibition running in parallel to the conference there was no surprise that our five pillars (http://dragonclaw.net/index.php/live-well/pillars), along with the many associated health related themes covered in our Dragon Talks series were well represented by exhibitors with many new and interesting approaches to making self-care easier and more effective.  From the many providers of supplements to new innovative simple devices for aiding better sleep to monitoring of diabetes, cholesterol and blood pressure are all products and services coming to pharmacies near you. Consultations with your healthcare professionals will get easier and more accurate with our KYN self-care tool and the keeping of accurate information.  The overwhelming learning from our time at the Gold Coast was that we are all focused on the same approach of making healthcare more readily accessible. There is a growing recognition that models of healthcare delivery are being developed to promoted patient-centred care. These may include patient facing tools to promote active participation by patients, such as Know Your Numbers.

Our thanks go out to Dragons Jackie and Rudy who volunteered to help staff our small booth, keeping it manned throughout the exhausting schedule over the four days giving us plenty of opportunities to meet and build our network.

Prior to the conference we had the opportunity to appraise The Hon. Peter Dutton, Leader of the Opposition on the completion of our Government funded Indigenous Medication Adherence Video Messaging project. This led to discussions during the conference which he attended and addressed. We also had the opportunity to meet with Gerard Benedet, recently appointed as Executive Director of The Pharmacy Guild (https://www.guild.org.au/news-events/news/qld/gerard-benedet-appointed-executive-director,-pharmacy-guild-of-australia ).  Gerard was most helpful regarding our future engagement with pharmacists and the challenges we face in recognition of the work of our charity.  We very much appreciate and respect the support that the Pharmacy Guild have given us during the past five years.

During the conference we offered a prize draw for registration at our booth and Monika Boogs, deputy CEO of Pain Australia was drawn from the hat at random by an independent volunteer. Congratulations Monika.

Thank you to all our volunteers who contributed to make this a successful representation of our patient-centred charity to thousands of Australian pharmacists.

May 30th, 2024

Dragon Dr. Charmaine and a good sampling of her former classmates enjoyed an evening event hosted at the Faculty Club, University of Toronto to catch up on their lives over the last half century!  Charmaine has attended the 35th, 40th and 45th previous to the 50th …. but there were several attendees for whom this was the first class reunion!  So more reconnections were made. 

During the entire evening, no one shouted “Is there a doctor in the house!”

1974 Graduating Class , Faculty of Medicine, University of Toronto (UofT), Toronto, Canada.

Can you spot the dragon?

Spotlight on Jackie Morris
by Susan Hughes

Dragon Jackie Morris, diagnosed with Rheumatoid Arthritis 40 years ago, has been a member of Dragon Claw for over the last four years attending the online Dragon Talks series and juggling her beginners’ golf clinic leadership program commitment. She has also been an active member of our charity’s Patient & Carer Advisory Committee and been our charity’s delegate attending national health sector workshops and conferences.  Mastering her PowerPoint skills Jackie has prepared and presented Dragon Talks including her previous volunteer work as a Rheumatoid Arthritis Patient Partner, Dog/Animal Therapy, Spotting members’ home locations around the world using Google Maps and recently on How Best to Manage Travel with Mobility issues. We felt it was time to share her wide variety of life’s activities while courageously living with a chronic health condition. 

She pursued a teaching career for 35 years, teaching German, French, Japanese and Italian.

She and her husband, Colin, both enjoy their sport of golf, and together with their daughter Katie discovered a passion for travel. This included 6 trips to Africawith the help of Dr Peter Brothers, who was a wildlife specialist veterinarian in a private game park. We have really enjoyed watching her videos working with a variety of animals including an elephant that was named after her daughter “Katie”. Katie assisted the vet in repairing his damaged foot (the elephant’s, not the vet’s!). 

Jackie has a delightfully warm and relaxed personality and more recently she has taken on a ‘behind the scenes’ charity role by managing our emails, daily, from This email address is being protected from spambots. You need JavaScript enabled to view it..  Thank you Jackie, for your support and for so generously sharing your time and skills helping our small volunteer team keep the wheels turning with our important work in encouraging self-care for patients with autoimmune diseases.  A great role model of a patient managing her long-term painful disease and simultaneously thriving and making a difference for her community.

By  Dragon Linda Gaudet

On our trip home, traveling East across Canada, Charmaine and I made it a point to see as many Dragons as possible. The last photo is of Dragon Charmaine with Robin Mallery  who shared with us “batch cooking” - the video is on our website under nutrition. 90 minutes of kitchen zen link.  She and I went birding together in Magee March Ohio, USA.

“Powerful. Heart-breaking. And we are in awe.” Dragon Dr. Charmaine Jones.

Dragon indigenous member Aunty Lynda, proud Dunghutti woman, recently presented at both Dragon Talks 1 & 2 meetings,  some of her story behind her newly published book written with Jo Tuscano. “This Is Where You Have To Go”. It is a deeply moving account of forced adoption and Lynda’s fight for justice.

She has recently been featured in the Australian Women’s Weekly magazine and interviewed on the ABC Radio National’s ‘Life Matters’ program where she shared part of her life story.

https://www.abc.net.au/listen/programs/lifematters/this-is-where-you-have-to-go-a-story-of-forced-adoption-and-a-mo/103728530

The book can be purchased through various outlets including Amazon.

“One of the hardest things for a doctor to do…is nothing. This superb book explains how in medicine and surgery less is often not just more. It’s closer to the oath we’re all supposed to practice by” Norman Swan, award-winning producer and broadcaster of the Health Report and Coronacast.

Co-author of Hippocrasy, Prof. Rachelle Buchbinder,  AO FAA FAHMS is an Australian Rheumatologist (Monash University)  and clinical epidemiologist and co-author of Hippocrasy, kindly talked about the background of shared decision making as a prelude to sharing her extensive knowledge about the research into the use of cannabis for chronic pain. It was a message a lot of us suffering from pain didn’t want to hear! 

You have to take your patient partner to an appointment, and you are up to the wire for time when you go out to the car and find a flat tyre! Aargh!!

Caregiver Support Corner

By Dragon Alasdair Cook 

As carers, and with our patient/partners, we tend to lead organised, but often very busy, and sometimes frenetic, lives. How then, do we cope with the unexpected, be it a pleasant surprise, or an unforeseen disaster?

Generally speaking, managing a life with auto-immune issues and the attendant flares, we tend to develop predictable, but necessary routines. This is vital if we are to ensure that diet, exercise, physical and mental downtime and medications are managed and administered in a routine and efficient, but necessary, way.

Picture a typically busy day; your partner has an exercise class, followed by a long drive to the city for a specialist’s appointment, then lunch with friends before the afternoon nap. The exercise class time affords you the opportunity to do some shopping, collect medications at the pharmacy, fill up the car. While you are at the garage the Pool Lifeguard calls, your partner has fallen getting out of the pool, and does not appear to be physically hurt, but is clearly mentally shaken, can you come right away and pick them up and get them checked out? 

The first thing, obviously, is not to panic. Your mind runs amok as you rush to the Pool, imagining the worse, but hoping for the best. Your partner is obviously shocked and shaken, no bruising, no sign of any bumps or scrapes, but clearly in no shape for a long drive to see the Specialist and then have lunch with friends. Luckily the Specialist is flexible and can re-schedule, the friends too, but the GP is too busy to fit in a quick check-up, and suggests going to Emergency, where the estimated wait time is 4-6 hours. Your partner refuses to go to Emergency and insists that they are already feeling better! After a light lunch your partner goes for a nap, do you wake them every half hour and ask them what day it is?

Both of you are shaken and out of sorts, two events have to be re-scheduled, but tomorrow is another full day, with its own routine and scheduled events, and so life must go on, hopefully with lessons learned. 

 So, we must keep smiling and striding into the future, all the while taking care of ourselves, our partners and both our own physical and mental health.

As we bid farewell to Terry, we reflect on his contribution to our organisation. His dedication and expertise was instrumental in the creation of the Aboriginal Video series and so much more.

While we will miss Terry’s presence on the board, we are grateful for his time and dedication. He will continue to be remembered for his contribution, commitment and service.

As a small token of appreciation, we presented Terry with a pen and a card to remind him of his experiences with Dragon Claw.

On behalf of Dragon Claw, we extend our heartfelt thanks to Terry for his invaluable contributions and wish him all the best for his future endeavours.

Abatacept trade name Orencia is a drug used for treatment of those with arthritis and there is a supply shortage – please see updated info provided by our friends at Arthritis Australia at the following link: https://arthritisaustralia.com.au/shortage-of-abatacept-orencia/

update June 2024 from Australian www.tga.gov.au

The pharmaceutical company Bristol-Myers Squibb Australia (BMS) has notified us of shortages of both Orencia (abatacept) 125 mg/mL products for subcutaneous administration:

The ClickJect (autoinjector) is in shortage due to manufacturing delays. The prefilled syringe is in shortage because of an expected increase in consumer demand.

The shortages are only affecting the Orencia subcutaneous presentations. There is sufficient stock of Orencia 250 mg intravenous (IV) to support patients currently receiving it.

This is similar in Canada: https://www.drugshortagescanada.ca/shortage/222656

Tuesday Evenings Canada and Wednesday 10am Australia.

Wow…that quarter went by quickly. Dragon Talks 1 continue to meet Tuesday evenings in North American/ Wednesday morning in Australia. These are opportunities to continue to share our paths through autoimmunity, hearing and supporting each other.

We have learned more about our sleep stages by Dr Helen Driver (this talk is uploaded on our website if you missed it), and learned more from our dragon Dr Alex McLeod on ecotoxicology. Dragon Rachel Lea educated us on the POTS syndrome, a not uncommon co-morbidity. We have been reminded of the importance of our thoughts, the strength of the mind/body connection by guest Deborah Edwards. 

We learned about the importance of Fun and dragon Jackie shared some of her many African veterinary adventures while sharing travel tips with us. We will learn about medical cannabis from Dr Rachel Buchbinder and have a mini-series on trauma’s relation to autoimmunity by trauma therapist Dr Veronique Mead. 

If these are tickling your interest, and you’d like to join us, simply contact me to be added to our weekly invitation list. This email address is being protected from spambots. You need JavaScript enabled to view it.

Mark your calendar if there is something here that interests you!  

Tuesday Evenings Canada and Wednesday 10am (AEDT) Australia. 

DT1 schedule - always subject to change and notified every week! Watch for the weekly email.

Enquiries to attend email Charmaine Jones This email address is being protected from spambots. You need JavaScript enabled to view it.

During national carer's week (15-21 October), we took time to acknowledge and celebrate the people who provide us with support and care to manage our autoimmune conditions, and were privileged to hear directly from the partner of a DT2 member about their experience.

We have covered a very interesting range of topics this quarter! Helen Jentz, the CEO of Musculoskeletal Australia presented on self-care resources for muscle, bone, and joint conditions. We considered the effect that tattoos have on our bodies and immune system, as well as how to say 'no' to activities that do not support our wellbeing. Dragon Jackie shared her travel tips, and we learned about resistance training from Exercise Physiologist Sarah Comensoli  http://dragonclaw.net/index.php/component/allvideoshare/video/dt-resistance-training?Itemid=101.

We gained insight into scleroderma, a rare connective tissue autoimmune disorder which causes thickening in the skin and other areas of the body. We also kicked off our new series of monthly lupus talks, starting with our friends from Kidney Health Australia covering how lupus can damage the kidneys and what we can do to care for our kidneys (http://dragonclaw.net/index.php/component/allvideoshare/video/kidney-health?Itemid=101). This was followed by patient Andrew who shared his lived experience with lupus and difficulties with diagnosis. Thank you very much to our guest speakers, attendees, and supporters who have all helped to make this quarter such a success.

DT2 - Upcoming topics

Dragon Talks Enquiries please contact 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.
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

Gutsy Support - Gutsy Peer Support - Crohn’sand Colitis Canada

crohnsandcolitis.ca

www.painaustralia.org.au
Chronic Pain Aust. 1300 340 357 https://painmanagement.org.au/service