The Sarcoidosis Advocacy and Research Initiative (SARI) at UNSW held Australia’s first Sarcoidosis Symposium on Saturday 11th April in the Scientia Building at UNSW.
Sarcoidosis is a chronic, systemic inflammatory disease that can affect any organ, most commonly the lungs, lymph nodes, skin, eyes and heart. It occurs when the immune system becomes dysregulated, leading to clusters of inflammatory cells (granulomas) in affected tissues. The disease is highly variable-some people experience mild symptoms while others develop serious, life-threatening complications. Sarcoidosis can strike people of any age, but most commonly affects those between 20 and 50 years. The disease is often invisible and unpredictable, with fatigue, pain and breathlessness having a profound impact on quality of life, employment and mental health.
Reliable Australian epidemiological data on sarcoidosis are lacking. The only available Australian study suggests an incidence of approximately 4.4-6.3 cases per 100,000 population per year, which is widely considered an underestimate due to diagnostic challenges and under-recognition.
In contrast, comprehensive national registry data from Denmark report an incidence of 11.3-14.8 per 100,000 per year and a prevalence of approximately 77 per 100,000 population. Applying these more complete registry-based estimates to the Australian population (approximately 26 million) suggests that sarcoidosis may affect around 20,000 Australians at any one time, with new cases numbering around 3,000-4,000 each year. This is substantially higher than currently recognised and highlights a significant gap in diagnosis, data collection, healthcare planning and research.
With the organisation of this symposium SARI is endeavouring to give patients a voice and to advocate for greater visibility and research funding to improve the diagnosis, management and cure of this condition.
Six highly experience specialist clinicians made presentations on the many manifestations of this complex disease and six patients also volunteered to present their experience with living with the condition to the combined audience.
A few more than 100 people attended the symposium, the majority being patients. We made a strong effort to also invite GPs as they have an important role in the early diagnosis and then management of the condition. Despite communicating with every Primary Health Network, GP division and Local Health district in the metropolitan area we were disappointed that very few attended.
The day was a resounding success and patients were extremely grateful to be able to better understand the many different manifestations of this autoimmune disease, the very few therapeutic options that exist and the desperate need to undertake more research. The patient case studies presented were eloquent and heart felt and provided the clinicians with a better understanding on how pervasive is the impact of this condition on a patient’s wellbeing and quality of life.
The day ended with a strategy session where attendees were asked their opinion on how SARI could better advocate on their behalf to achieve real outcomes. Many ideas were presented and the establishment of a community Forum for SARI was proposed so that the patient community can participate in and drive new initiatives to drive advocacy and recognition of the condition throughout the community but also to every sector of the state and commonwealth government. On the basis of the feedback received, the SARI Board has agreed to restructure to permit greater participation from the patient community and to bring on-board a range of additional skills in business, finance and Government to ensure that SARI succeeds in its aims and achieves national significance.
The Symposium was considered such a success that the Sarcoidosis Australia Support Group donated $15,000 towards the cost of the symposium.
Watch the recording below
