Dr Judith R. Davidson, a Psychologist with clinical work and research focused on sleep disorders, talks to us about sleeping and pain with inflammatory autoimmune conditions. She discusses sleeping in the midst of flare-ups and symptoms that can make it hard to sleep properly, and gives us some tips and resources that can help.
Dr Helen Driver, a prominent Somnologist, registered Polysomnographic Technologist, and past-President of the Canadian Sleep Society, talks to us about sleep testing and therapy. While busy with her studies many years ago, she shares with us a personal story that compelled her to further her studies on the subject. Dr Driver discusses sleep testing and what happens during a sleep study, and talks to us about sleep aids and the different type of therapies for sleep.
Julie Jones, is a disability advocate with a background in the travel industry. When her son was born with Cerebral Palsy, Julie realised the big gap that existed in available information for people with disabilities that wanted to travel. The information when found was either conflicting, or only catered to a specific disability, whereas in reality many disabilities were also invisible – and not all disabilities of the same condition had the same needs.
by Julie Armstrong
Newsletter April 2026
There are moments in life where you feel a sense of belonging, and this was one of them.
From 6-8th February, members of our Dragon Talks community came together for a special in-person retreat, A Weekend of Belonging, at the Mary MacKillop Retreat Centre on Central Coast NSW. For three days we unplugged our devices and stepped away from our daily routines as we connected with ourselves, each other, and our beautiful surroundings.
From the moment people arrived, there was an ease with being together, some of us reconnecting with familiar faces, and others meeting for the first time. Friday evening set the tone with a relaxed dinner at the Kincumber pub and conversation flowed easily (and maybe some wine, too). We swapped stories, learned about each other and made plans for the future. It was a great opportunity to connect with people on an autoimmune journey, as its often a very lonely one.
There was no pressure to do anything over the weekend other than to take in the beautiful surroundings, and recharge.
We had no idea how much food we’d be getting! All our meals at the retreat were catered for and we’d find ourselves lingering around chatting after each meal only to discover the staff preparing the next meal due soon. All our needs were taken into account, as the centre considered everything. We all felt a sense of calm, not surprising considering the surroundings, as well as well-fed.
Over the three days we discussed important issues such as the rebranding of Dragon Claw to MyFlareUp, as well as our new website, and all the behind-the-scenes hard work done by our volunteers. As everyone in our charity has some connection to autoimmunity, getting feedback is important – to ensure we represent the voices in the autoimmune community. We also spent our time swimming, walking, enjoying the grounds and the history of the centre. The sing-along karaoke night was fun – who knew we had so many musicians among us!
The weekend flew by and it was sad to say goodbye, but some of us learnt something very important – that community matters. And being seen and understood is good for mental health – even a short time away can restore the body and mind. These quality hours together remind us how lucky we are to have this community. We parted with happy hearts and many plans for the future.
We believe our Maple Dragons Dr Charmaine Jones and Alasdair and Susan Cook are planning a retreat in BC. Some Aussie dragons are saving their dollars to attend – assuming petrol prices and living costs decrease! We’re waiting to hear more on the proposed venue and will update our Events page soon!
Melinda Barrett shares her deeply personal story of living with Lupus. From health challenges that began at a young age to the many connected autoimmune conditions she has been diagnosed with, Melinda speaks with honesty, humour, and wisdom about what it means to live with Lupus.
She describes herself as the ‘luckiest unlucky person’ she knows, and acknowledges both the difficulties and sources of gratitude in her life, which she candidly refers to as a beautifully messy human chaotic story.
Melinda’s story is a testament to her strength and resilience, summed up in her powerful words: ‘We don’t fight lupus, we negotiate it’.
Newsletter April 2026
Caring for someone living with an autoimmune condition is a deeply human act — one that often happens quietly in the background of daily life.
Whether you’re supporting a partner, family member, or friend, your role matters more than you may realise. And while every situation is unique, there are some simple, foundational principles that can help guide you — especially during times of uncertainty or flare-ups.
Sometimes, the most meaningful support start with the basics
I’m sure most of you know Maslow’s Hierarchy of Needs. His five definitions can basically be broken down into a triangle; our basic human need for food, fire, and shelter. As carers, when caring for our loved ones, we need to make sure that these basic needs are met. Survivalists will tell you that the first thing to take care of is shelter, after which you enable fire, then take care of food.
Shelter
Today most of us shelter in houses, condos, apartments; some of us may even live in trailers or caravans. We are surrounded by floors, walls, windows and covered by lofts and roofs. These features all require some maintenance, and it helps if we make an annual schedule to inspect these features before the seasonal changes we are now experiencing in our parts of the worlds. Assuming some physical ability and competency, we will do our best to conduct these inspections ourselves and come up with a “to do” list. Include the exterior terrain, pools, ponds and sheds/garages. Make sure drains and troughs for excess water runoff are clear. If we aren’t comfortable doing it, then we need to bring in a professional. Some examples would be eaves troughs, second and third story windows, and roof inspections. Check your insurance policy, most insurers now insist on an annual roof and eaves trough inspection done by a professional.
Fire
For fire, this typically means our cooking, heating and cooling infrastructure. Get these checked professionally twice a year, before the cold and hot seasons start. Cooking stoves, BBQs, boilers, water heaters, hot air furnaces, electric baseboards, gas fires and heaters, wood burning fireplaces, wood stoves. Exhausts and flues need to be checked for condition and leaks. You should include electrical, solar and plumbing panels and visible pipes and cables. I would suggest that these tasks be scheduled well ahead of the change in season, and accomplished by a professional. Check fire extinguishers, smoke and carbon monoxide detectors, fire blankets.
Food
If you’re lucky, both you and the person you’re caring for can prepare and cook meals, prepare provisioning lists, help with stocking a larder that has a minimum stock tally. Perhaps the actual daily checking and the physical shopping falls to you. If one or both of you are specific diets, then extra care should be taken with the food items you need, for example, seasonal vegetables and fruit. (Often frozen vegetables and fruit are useful in the shoulder seasons, likely less expensive, and tend to last longer.) We sometimes end up with leftovers, and this is where you and your loved one can have fun creating hearty and nutritional meals – even make new recipes.
It’s too easy to focus entirely on the person you’re supporting, but your wellbeing matters too. As carers, we so often carry a lot quietly.
Try to take moments to:
- rest and recharge;
- ask for support when needed;
- stay connected to your own life and identity;
- acknowledge what you’re doing – it’s significant!
You’re not just support someone else’s journey, you’re on one too. So, check your triangle, stay safe, and keep smiling as you stride into the future!
After MyFlareUp’s research project with Community and Patient Preference Research (CaPPRe) in 2024 found some alarming stats, we needed to explore why so many people in the autoimmune community today still continued to have severe symptoms, despite there being new treatment options available.
We discovered that of the participants surveyed, 45% of them knew nothing about biologics and 56% of them knew nothing about JAKi’s – and 34% of participants were on the same medications and dosages over the past year, despite them reporting moderate to high disease burden. We also found that 52% of participants believed there were no further treatment options available to them, other than what they’d used before.
What are Biologics and JAK Inhibitors?
Biologics is a protein-based medicine made from living cells that target specific parts of the immune system and because it’s a protein, it needs to be kept cool and is usually given by injection. JAK inhibitors (JAKis) is a tablet medicine that blocks Janus kinase signals inside immune cells, helping to reduce inflammation caused by an overactive immune system
Why is Medication Stagnation alarming?
Simply put, because unchecked chronic inflammation can lead to many long-term adverse outcomes, like joint destruction and kidney damage, which is precisely why people with autoimmune conditions need frequent reassessments, and adjustments in medication if necessary, to keep any inflammation under control.
How can you reassess?
Blood tests can track important markers of inflammation, immune activity, and importantly, how well your medications are working. Depending on your condition and the medication that has been prescribed for you, imaging may also be done to check how organs like your kidneys, liver, lungs, or heart are functioning. These tests can help identify changes early, before they escalate.
We designed a Monitoring Tool to help you track
We designed a tool to help you and your healthcare provider identify if your treatment is working. This tool can help make communication easier when you show that you have tracked your symptoms and test results, making it easier to advocate for yourself for any adjustments to you need to your treatment plan. Some adjustments can be like being able to identify if your current medication is working for you.
Remember, any unchecked symptoms of inflammation can be missed when the numbers in your test results seem fine, or when you don’t experience any symptoms – which is why looking at either of these in in isolation can result in your condition not being optimally controlled. Some monitoring goals can be to:
- detect early flares;
- detect any disease progression;
- monitor any organ involvement (kidneys, central nervous system (CNS), skin, lungs and cardiovascular system);
- evaluate effectiveness and safety of your treatment;
- screen for any comorbidities and complications;
- maintain low disease activity;
- to try get into remission.
What is Remission?
Eventually, we’d all like to get our autoimmune condition into remission, but it’s important to know that remission is not considered ‘a cure’. You can be in remission while still on medication, and is when no symptoms or signs of inflammation shows up in your medical or physical tests. You are in remission when you have no symptoms and there are no signs of inflammation in your medical tests or physical examinations. Remission is now recognized by experts around the world as an achievable and meaningful goal for people with autoimmune conditions.
Your Role
Every person with an autoimmune condition trying to manage symptoms should take the time to track symptoms, flare patterns and energy levels. Doing so while also learning to identify triggers will help you build a picture over time. It can be challenging to explain your symptoms to your doctor in a short visit, but being able to show a picture over time can help you play a role in your treatment plan, and being an active passenger in this journey is very important.
Lastly, it’s important to realise that with autoimmune conditions, there is no one-size-fits-all. Regularly communicating with your healthcare provider and clearly clarifying your goals can be an enormous benefit to your treatment plan.
Download the My Numbers Tool below to help you on your journey.
My Numbers Tool
Use this tool to track your tests results and symptoms to help reveal any patterns, which can be useful to advocate for any changes to your treatment plan. This tool was designed to make communication easier with your doctor by showing you have tracked your symptoms and recorded your test results. My Numbers Tool is proudly endorsed by the Australian Rheumatology Association (ARA).
Autoimmune flares don’t happen ‘out of the blue’, even when it feels like it. Epigenetics can help explain why. Think of it as the way your environment and experiences like stress, infections, sleep, hormones, diet, even medications can switch certain immune genes on or off, without changing your DNA itself. In RA, these switches can turn up inflammation, making joints suddenly hurt, swell, or stiffen.
