In this Dragon Talk ‘Lupus Series’ session, Andrew shares his personal journey of being diagnosed with lupus as a young adult, after experiencing severe unexplained fatigue and myalgia for years.
Doctors initially diagnosed him with an ongoing viral infection but his symptoms continued. Andrew explains how his mum had been the driving force behind him being taken seriously, fiercely advocating for him at doctors appointments. He talks about the challenges growing up with the unpredictability of his symptoms, but how his mum supported him through the tough times and acknowledges that he likely wouldn’t have gotten his diagnosis if not for her taking dragging him to see a rheumatologist that she knew. By this point he had all but lost hope of finding the answers, reluctantly agreeing to go.
It was after seeing the rheumatologist that he was quickly diagnosed with lupus. Andrew immediately went on the right medication which got his symptoms under control, and talks about the insistence of his rheumatologist asking for regular check-ups with routine blood tests.
It was after a routine blood test one day that his rheumatologist discovered he had developed stage IV lupus nephritis, which came as a shock. Andrew soon began an aggressive round of treatment, which included chemotherapy. His rheumatologist said he had been months away from full kidney failure had he not been going for routine check-ups.
Andrew speaks openly about managing lupus while working full-time, and the physical and emotional challenges that went with it. He talks about the lifestyle changes he made after being diagnosed with lupus nephritis, and how it improved his overall wellbeing. He became more active, reduced his intake of processed foods, cut out gluten, and more. This is Andrew’s personal story which he has generously shared with us in this session to help raise awareness of lupus and how it can manifest for different people, regardless of age or gender.
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’.
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.
