Sarcoidosis is a relatively unknown disease not only to the Australian public but also to medical professionals. Diagnosis is extremely difficult, and management is often limited and ineffective. Following a diagnosis of sarcoidosis, patients often suffer in silence and hoping for a spontaneous remission or a new breakthrough. The last papers on sarcoidosis published in the Australian Medical Journal were published in 1974 and the incidence and prevalence of the condition in today’s Australia is not really known.
It is important if we are to stimulate greater public interest in the condition and to promote new research for the public as well as clinicians to fully understand the impact that sarcoidosis has on the quality of life of patients and their carers. Your stories are important, and SARI offers a platform for you to tell us your story from first diagnosis to your current daily management of the condition. You may keep your story anonymous, or you may not, It is your choice. Every story will be reviewed by SARI management before being published, so please avoid providing names or commentary on specific clinicians or services.
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“Research is needed on new antibiotic regimes, better understanding the relationship with Vitamin D, the design of possible vaccines, better ways of diagnosing and managing sarcoidosis and developing a better understanding of how the immune system and a patient’s own genetics lead to susceptibility to MAP. Infection. These are some of the key objectives of SARI, for which we need the support of the public. ”
— Branko Celler
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"Maher said she felt compelled to set up an online petition about the issue - which she likens to "medical testing discrimination" - after speaking with other Australians with sarcoidosis."
– Emily McPherson, Senior Journalist (Nine News)
Read the original article published by Nine News
"In summary I had to do everything myself to chase down the cause and treatment for this disease. The medical system is great for emergency care if you break something or have a heart attack but is absolutely woeful when it comes to chronic disease. "
– Stephen Askew
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Visit the SARI YouTube playlist for all interviews
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You may keep your story anonymous, or you may not, It is your choice. Every story will be reviewed by SARI management before being published, so please avoid providing names or commentary on specific clinicians or services.