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A patient journey filled with courage and inspiration…

Amanda had run out of options to treat her Cushing’s disease.

The diagnosis
In 2015 my world as I knew it was shattered.

I had been experiencing muscle deterioration from my hips down, bruising (mainly on my arms), thinning of my hair and skin. While I hadn’t put on weight, I had a bloated stomach and my face was puffy. My emotions were very fragile. I was referred to a blood specialist who listened to what I had to say. They sent me for an MRI and 24-hour urine test, and the results came back that I had a tumour on my pituitary gland. Not what I was expecting.

I was then referred to a great team of specialists at St Vincent’s Private Hospital, in particular Associate Professor Ann McCormack, an endocrinologist. She explained that I had “Cushing’s disease”.

For those who don’t know, Cushing’s disease is a condition in which the pituitary gland releases too much adrenocorticotropic hormone (ACTH). This leads to increased levels of another hormone called cortisol. It is caused from a tumour or excess growth (hyperplasia) of the pituitary gland.

The good news was that the tumour was normal – not malignant, and was treatable.

This was a small sign of relief for me. Finally my symptoms had been given a name and with the team, I was now on track to getting help. I didn’t know it then, but this was only the beginning of my journey, and nothing could prepare me for the years to come.

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