Michael Julian, a Koori musician and educator, has spent his entire life living with an unpredictable and debilitating condition.
Tumor necrosis factor receptor-associated periodic syndrome (TRAPS) is a rare genetic disorder that affects the immune system and many parts of the body. Symptoms can appear at anytime, anywhere in the body, and the pain can often be paralysing.
Throughout his childhood and early adulthood, Michael experienced bouts of piercing pain and hospitalisations.
Both his father and his aunt had the condition. When Michael was three, his father died from complications of TRAPS treatment.
After almost 35 years, Michael’s life was transformed when he saw Dr Charlotte Slade, a clinical immunologist at the Royal Melbourne Hospital and co-deputy director of the Snow Centre for Immune Health.
She was able to match him with a drug that blocks the immune signalling that causes inflammation in TRAPS. For the first time in his life, Michael is pain free.
“Meeting Dr Slade was the biggest, most life-changing moment. It was something I’d always dreamed about – that maybe there was an answer out there. Finding the right treatment is what I’d been hoping for all my life.” says Michael.
In March 2023, Michael and his partner Dominique were overjoyed to become parents to a delightful little girl, Pearl. While Pearl has inherited TRAPS, Michael and his partner are optimistic that she can be treated and live a relatively normal life free of symptoms.
In Australia, allergy and immune diseases are among the fastest growing chronic conditions.
The Snow Centre for Immune Health has been established to tackle the major global health challenges of immune health.
The centre will help improve the lives of millions of people with immune, autoimmune and inflammatory disorders – from lupus to those with anaphylactic food allergies.
“Most immune conditions have no cures, and treatments are often limited, especially one as rare as Michael’s. I’m just so pleased we were able to source a drug to manage Michael’s symptoms.
“Through the work at the Snow Centre for Immune Health, we can fast-track how we treat immune conditions. Our goal is to eventually transform the lives of millions of people, like Michael, who are living with debilitating immune conditions,” Dr Slade says.
Co-led by WEHI and the Royal Melbourne Hospital, in partnership with Snow Medical, the centre is bringing together leading Australian and international researchers with a shared mission to transform how we research and treat the immune system—to transform the lives of people like Michael.
This article was originally published via the WEHI website.
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