Hi, my name is Peter Stephens. I was finally diagnosed with hereditary ATTRv Amyloidosis, (Thr80Ala) on 9/9/22. Although I had presented with many symptoms in the previous years, it was actually as a result of my older brother Terry finally having his diagnosis confirmed after years of illness and investigations. Terry had been diagnosed with prostate cancer around 2013, and after having that treated, he attempted to resume his [...]

My name is Sean, and my Amyloidosis story began in 2011 when I started  experiencing itchy skin. The doctors didn’t know what was causing this itch, so I was given Pervaryl lotion, a treatment for fungal infections and when this did not do any good a scabies cream which didn’t work either. Lesions began to appear on both legs and on my stomach and these affected areas have grown [...]

Like many people, I was looking forward to retiring, travelling, and trying to get fit - yet I was having trouble even walking up steps and certainly had no chance on a steep hill. My name is Susan Booth and in 2021 I was diagnosed with AL amyloidosis secondary to multiple myeloma. A stress test referral from my GP to cardiologist Dr Michelle Butler identified some thickening of the [...]

I’m a 62-year-young retired ICU nurse with a long career in critical care and medical education, so finding out I had AL Amyloidosis was a huge shock. My reaction? “What the @#$% is that?” I already had SLE and MGUS, and I’d been on IV immunoglobulins since 2004—yet somehow, this was a new one. My diagnosis finally came in December 2019, after two years of exhaustion, bad reflux, and [...]

My Amyloidosis Story My name is Sue Birdsall and I am 79 years old. In April 2016 I was diagnosed with AL Amyloidosis affecting my heart. I have intended to write my story for some time. Now seems particularly pertinent as I am currently in remission after 7 long years of chemotherapy. Though my Amyloidosis journey has not been easy I was fortunate to be diagnosed relatively early. The [...]

Hello all, I'm Chris from Brisbane. (But really, I'm an old Kiwi, living in Brisbane since 86). I actually I came to Australia first in 1967. I am now 74 years young. My confirmed diagnosis with AL amyloidosis was in December 2021. In 2018 I was confirmed first with MGUS then Multiple Myeloma. My GP was highlighting my abnormal light chains for all that time to my 'specialist' both haematologists, [...]

A long and difficult journey to a diagnosis of a disease I had never heard of. Although I have recently been diagnosed with Hereditary ATTRv Amyloidosis I believe that I have had some symptoms for most of my life. In 2014 I started having issues with my back, ending up having a laminectomy. In 2016 I started getting swelling in my legs, woozy episodes where I would stand up and [...]

My journey with Amyloidosis began in November 2018 when I discovered an alarming protrusion on the surface of my right breast. That day my doctor immediately arranged for me to present at the Wesley Hospital’s Diagnostic Breast Clinic for investigation. The tests carried out at that Clinic included an Ultrasound and a Mammogram and a biopsy of the worrying area on my right breast.  Six days later my stitches were [...]

In about 2006 I experienced chest pain, but my doctors came up with no explanation and it was put down to either a panic attack or chopping wood with an axe! However, a remark was made at the time that that I had a slight thickening in my heart and a left bundle block on ECG, which may it was said have been related to previous high blood pressure. [...]

 I have AL amyloidosis and I want to tell you my story and encourage all of you to work together with the AAN to get daratumumab funded in Australia. The Pharmaceutical Benefits advisory committee, PBAC, meets in November to discuss funding this drug for the treatment of AL amyloidosis By submitting our experiences of living with AL amyloidosis or if you have been treated with daratumumab, how that has [...]