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’.
Ever wondered what goes into training and choosing a service dog? Erin’s story and Lexi’s charm bring it to life in a few minutes. Erin, living with Multiple Sclerosis, shares why she chose a service dog and introduces us to Lexi, the four-legged partner who’s changed her everyday life.
Join Amanda Lawrie-Jones as she shares what it’s really like to live with scleroderma in all its forms. Her warmth and clarity make this a video you won’t want to miss.
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.
Julie shares her personal story of resilience, struggle and perseverance with Lupus. She has Systemic Lupus, Cutaneous Lupus and CNS Lupus. Julie was one of the first patients in Australia to receive the new Lupus treatment at the time, Anifrolumab. She talks about her journey on the treatment and shares her optimism with the results, and hope for people battling autoimmune conditions.
This is Andrew’s Lupus story. He talks about his symptoms and the emotional journey he’s taken, and where he is today.
Daileen Cortex Caudillo opens her story with courage and heart, helping us understand what living with Still’s Disease really looks like, beyond the medical words.
