My story: I have been diagnosed with a “rare”  autoimmune disease called Cardiac Sarcoidosis.  This was discovered after I had a massive heart attack at the age of 44.  I had no symptoms that anything was wrong prior to this.

I was then diagnosed with Myocarditis and eventually Cardiac Sarcoidosis, which is basically chronic heart inflammation.

In order to get my diagnosis, I have had multiple cardiac MRIs and PET scans.  I’m one of the lucky ones.  My out of the blue heart attack probably saved my life, considering I had no other symptoms.

Sadly, my story is not overly unique. 

Whilst Sarcoidosis is considered a rare disease, there are a LOT of people with it, and probably a lot more that haven’t been diagnosed. Sarcoidosis is a very serious disease that can affect any part of the body.  Diagnosis and management are crucial.  There is no way to prevent it (it is is not lifestyle related) and is managed rather than cured (it may go away on its own or go into remission for periods of time)

Regular MRIs and PET scans are part of our lifelong management for all forms of Sarcoidosis.

For heart related sarcoidosis, unless your heart issue is a result of Covid or the Covid vax, we have to pay between $600 & $1000 + per test!  This is the same for all other sarcoidosis fighters that need these tests, such a Pulmonary and Neuro sarcoidosis.  This is completely out of pocket and is not even recognised towards the Medicare yearly cap.

 This cost includes getting them done at a public hospital!!!

Without the availability of these tests, diagnosis and management of this horrible disease, and many others, is likely to be missed, putting our lives at risk. 

As Australians, we deserve better!  Access to lifesaving testing should not be dependent on money!  We deserve MRIs and PET scans to be subsidised by Medicare!