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’.
This is a video that was developed in conjunction with the Dubbo and Coonamble Aboriginal Health Services. The focus of the video was to encourage awareness within the community of the support and treatment options available for the debilitating impacts of musculoskeletal conditions in Aboriginal communities across Western NSW.
A significant number of our fellow Australians in the Getting you Life Back video may continue to accept their symptoms as unavoidable ‘aches and pains’ of life, which can lead to needless suffering and physical impairment – unaware that some ailments are indeed treatable.
This video features local Aboriginal people, in their own words, encouraging anyone regardless of age, to seek the help of local healthcare providers, and to then follow their treatment plan with the prescribed medications.
Help us improve musculoskeletal health in Aboriginal communities.
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).
Newsletter April 2026
MyFlareUp was honoured to launch My Pain Assessment Communication Tool (MPaCT) in partnership with Painaustralia at the Parliamentary Friends of Pain Management event on 10 March 2026 at Parliament House in Canberra, Australia. This event brought together patient leaders, clinicians, advocates and policymakers to discuss the future of pain communication in Australia – and the urgent need for reform.
The old “1-10 pain scale” was simply not adequate, and a new way of conveying the affects of chronic pain was needed – one that would put the patient’s voice at the forefront.
Led by MyFlareUp’s Dr Charmaine Jones MD (AOA), Retired Palliative Medicine, Director of Dragon Claw and Co-Facilitator of Dragon Talks, and in partnership with Canadian Chronic Pain Network other dedicated team members, an important new resource for pain communication was created – one that would challenge the old model.
Because pain is personal, and communication should be, too.
It took over 15 months of in-person and Zoom meetings in both Australia and Canada to complete the resource, but it was done. A powerful new patient-led tool was developed by patients for patients, with the aim of understanding the experiences of people living with chronic pain. If a patient’s treatment team could understand how pain affected them – the chances would be higher for them to get the treatment needed. Rather than focusing solely on intensity of pain, this tool would help people living with pain better communicate:
- the impact of pain on daily function, work, and relationships;
- what matters most to the patient;
- what the patient’s goals are for care;
- what support the patient feels they need to live well.
MyFlareUp’s chair, Alison Marshall, moderated a panel and interviewed two patients with lived-experience of chronic pain at the event. There was a panel clinician, Dr Romil Jain, founder and director of ACT Pain Centre who is also a qualified pain medicine physician and Interventional Pain Specialist, as well as Kim Allgood of Purple Bucket and Andrew Thirwell, MyFlareUp’s Lupus Patient Ambassador.
MyFlareUp’s Dr Charmaine Jones said the launch marked a significant shift toward genuine patient partnership in care. “My pain is not a number. Reducing pain to a score doesn’t capture what it takes from our lives – our work, our sleep, our relationships, our sense of self. MPaCT gives patients a structured, safe way to explain their pain in their own words and to identify what matters most to them. When patients can communicate impact and priorities, clinicians can partner with us more effectively. That is the foundation of truly shared decision-making.”
Monika Boogs, CEO Painaustralia, said launching the tool at Parliament House signals growing recognition that pain reform must be informed by lived experience. Painaustralia is the national peak advocacy group representing 3.7 million Australians living with chronic pain and works to ensure their lived experience and voice is part of the national conversation about addressing chronic pain.
“Chronic pain affects one in five Australians, yet too many people feel unheard or reduced
to a number. Tools like MPaCT strengthen shared decision-making and support more meaningful conversations between patients and health professionals. Launching this tool at Parliament House reinforces an important message; the patient voice must be central to policy, funding decisions and clinical reform.” said Ms Boogs.
MyFlareUp is a global patient-led community platform established for people living with autoimmune conditions. MyFlareUp hosts regular online expert talks via Dragon Talks, featuring guest speakers, and online and in-person member meetups where members can connect and share their experiences while learning important self-care practices.
MyFlareUp’s goal is to empower members through knowledge by bringing them closer to shared decision-making in their own treatment plans. While Dragon Claw has recently rebranded to MyFlareUp, the focus remains unchanged – to empower patients to not just survive chronic conditions, but to pursue remission, agency and informed partnerships in their health care.
Members of Parliament and attendees at the Parliamentary Friends of Pain Management event acknowledged the critical role of patient-led initiatives in shaping the future of pain care in Australia, as chronic pain remains one of the most complex and costly health challenges facing the nation today.
Will Gregory, a consultant physiotherapist and vice-president of British Rheumatology Society, is an expert clinician in the world of rheumatology. He talks about the importance of keeping physically active when you have an inflammatory condition.
We talk about kidney health and the impact on Lupus. Amanda shares her personal Lupus story and then we hear from Stephen Cornish from Lupus Health Australia, who talks about the importance of support on your journey.
We talk about kidney health and the impact on Lupus. Amanda shares her personal Lupus story and then we hear from Stephen Cornish from Lupus Health Australia, who talks about the importance of support on your journey.
This is a recording of one of our Australian’s Dragon Talks sessions.
Zali McPherson is in her early twenties, and shares her story with Lupus. Looking back, Zali realised her symptoms actually started as young as 8-years old, but growing up in four different countries at the time didn’t make it easy for her to develop a relationship with a fixed primary healthcare provider. Finally at 17-years old and back in Australia, she pushed to find out the cause of her ongoing fatigue and recent back pain. It was no easy feat finding a GP to take her seriously – most dismissed her, she was a teenager after all. Zali knew something wasn’t right, though. One day at a physiotherapist appointment for her back pain, she was asked about her intermittent joint pain and that’s when she got the idea to be tested for Rheumatoid Arthritis. The very next day she found a GP that agreed to test for RA, and at 18-years old Zali finally got her Lupus diagnosis. Advocating for yourself to be taken seriously is hard enough – let alone at such a young age. Zali’s story is truly inspirational and an important one for people still on the journey to getting a diagnosis.
Do you know the difference between Rheumatoid Arthritis and Lupus? Rosemary Ainley, Advocacy Manager and Senior Editor of Creakyjoints Australia, and Naomi Creek, National Coordinator of Global Healthy Living Foundation, share their experience to discuss the differences in Lupus and RA symptoms and diagnosis.
Pru reminisces on the ups and downs of her Lupus journey – and her story truly is a riveting one. Talk about resilience! Today Pru advocates for education of better understanding of autoimmune conditions and communication between patient and specialist. She volunteers to participate for Australian Lupus Registry (ALRB) and Biobank for SLE patients.
Prof. Eric Morand, Dean of Sub-Faculty of Clinical and Molecular Medicine at Monash University, and Head of Rheumatology at Monash Health, gives a presentation on ‘Specific Therapy for Systemic Lupus Erythematosus (SLE).’ He talks about new research in an article published in Feb24 from Monash, ‘Smith-specific regulatory T-cells that halt the progression of Lupus Nephritis’.
Prof. Morand explains why people with Lupus have their kidneys ‘attacked’, as opposed to people without Lupus.
The real breakthrough, he explains, is recognising that key factor in why healthy people don’t get get their kidneys ‘attacked’, and that is because they have Regulatory T-cells. Essentially, when you have a healthy immune system, your body switches “on” the cells that kill bacteria, and has the ability to then switch them “off” again with a T-Reg cell (a ‘slowing down’ cell).
In people with Lupus, the germ fighting cells do get activated, but have no “off” function, which results in autoimmune disease. This “off” function is what slows down an immune response in your body.
Watch Prof. Morand’s full presentation to learn more of this exciting research.
