Janette’s Story

When I first heard the word sarcoidosis in January 2022, I had no idea how deeply it would reshape my life.

My sarcoidosis journey probably started decades before 2022. When diagnosed, I was told my lungs were permanently damaged. Called the snowflake disease as no two cases are the same, sarcoidosis can affect any organ in the body and is difficult to diagnose as it mimics other conditions.

Lack of awareness among the general public, politicians and medical professionals often results in long wait times for a correct diagnosis and treatment. My diagnosis was unexpected and life-altering for not only me but my family, too.

I was an educator working in a hospital school and hoping to transition to retirement on my own terms. My respiratory specialist advised me not to return to work. I opted to take leave but eventually came to the realisation that returning to my teaching profession was not possible. Working with children and constant infection exposure was not advisable. Fatigue, breathlessness, side effects from medication and endless medical tests and appointments were also consuming my life.

Two years after my diagnosis, I was not convinced that the two respiratory specialists I had consulted were correct with the diagnosis that my sarcoidosis was not active. Armed with a 30-year timeline of my medical history, I travelled interstate to seek second opinions. These appointments put the jigsaw pieces together.

All my past health issues were related to sarcoidosis and despite seeing so many specialists over a decade ago, no specialist could put my puzzle together. Hearing the stories of other sufferers of this complex disease has motivated me to advocate for recognition of sarcoidosis. I presented my sarcoidosis journey at the first Sarcoidosis Symposium in Sydney in 2026 organised by the Sarcoidosis Advocacy Research Initiative.

Many patients feel alone and need support. I have initiated support groups to help others deal with the challenges of this condition. Sarcoidosis awareness and advocacy for this inflammatory disease is vital. Someone close to me had a cardiac arrest last year and their diagnosis was sarcoidosis. Their words to me were, “To say that this disease has had a profound impact on my life is an understatement. I wonder what my life might be like for me had I been diagnosed earlier.”