My Amyloid Journey

My name is Julie, and I am 55 years old, I work as aAdministration officer in my local hospital. In 2018 I started getting a hoarse voice and a fellow colleague made a comment that she had also noticed this. I had also, but thought it was just something temporary. After another couple of week of my throat not clearing up I asked my GP about it. I was seeing him quite regularly asI had been diagnosed with graves disease and was under his constant care. He said it probably wasn’t anything to be concerned about possibly nodules on my vocal cords. Another couple of months with my voice becoming increasingly hoarse I noticed I could no longer sing along to music something I enjoyed immensely, talking was getting harder.

Everyday I pray that some miracle will happen and they will find a cure or treatment. I am angry it has impacted me dramatically.

January 2109 I asked (demanded) my GP to refer me to a ENT specialist for further investigations fortunately I got an appointment quite quick out of professional courtesy. I saw the specialist and he referred me for a CT scan on my throat then a MRI. Which clearly showed something there on my vocal cords. He immediately booked me in to have a biopsy on my throat with came back not cancer but Amyloid. Unfortunately this is where things really went a little out of order he really didn’t know what to do. I got referred to the Amyloid clinic here at Westmead hospital, but first I needed to get work up so I had all the appropriate test to see if the Amyloid was anywhere else. Fortunately it wasn’t. There is no treatment for my Amyloid, my new ENT specialist says he can debried it (the amyloid) when I feel it is time which I feel won’t be too far off. Some days, I struggle to speak, it’s exhausting, mentally draining. As part of my job it requires me to talk most of the day to patients ect… I worry what’s going to happen when and if I lose my voice. I am only 55 it has had a huge impact on my social life I choose to stay away from conversations and smalll talk. I hesitate to make phone call for myself as it just seems too hard some days. But I guess I am lucky compared to other sufferers of Amyloid. Everyday I pray that some miracle will happen and they will find a cure or treatment. I am angry it has impacted me dramatically. This is my story so far…

My Amyloid Journey – Juliann – AUSTRALIA