Patient Experiences
Find and share the stories of real people around Australia and their personal experiences of Amyloidosis.
Multiple Myeloma and ATTRwt : balancing two difficult diagnoses
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 [...]
David Boyle – How the drug Darzelex SC, (daratumumab), saved my life.
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 [...]
AL, early remission and a heart transplant – Robin’s Story
My journey - from an active 57 year old cycling 250 km a week, completed his first triathlon, trekking in Nepal and Patagonia, an avid skier and traveling the world - to a 62 year old recovering from a heart transplant following a 4 year battle with AL Amyloidosis. [...]
Coral – My 17 years Living with AL Amyloidosis.
My Name is Coral and my symptoms started on boxing day 2001 when I woke with swollen ankles and a pain in my chest. A visit to A&E, admission to hospital and a kidney biopsy confirmed the diagnosis of AL amyloidosis. I was 39 years old and had until [...]
Miracle patient’s survival thanks to Australian-firsts
Article by Lauren Barker (first published on Central Adelaide Local Health Network) Lyall Pearce was feeling fit and healthy, having just celebrated his 50th birthday. “My grandmother lived to 101, so I was thinking I had about another 50 years left,” the husband and father of two from Hillcrest [...]
Coronavirus: Instructions for amyloidosis patients
Vaccination is vital to help control COVID19 and keep you and the community well. If we in Australia with the rest of the world are going to control COVID 19 also known as the Corona Virus and we want the Australian state borders to remain open, it is [...]
A Difficult Journey to a Diagnosis of AL Amyloidosis
“Life need not be easy, provided only that it is not empty.” Lise Meitner. In 2014 I was diagnosed with smoldering myeloma. I had various blood tests and treatment for lymphoedema. I did not experience any major lifestyle issues, walked every day, rode a bike regularly and [...]
Proteomics to the rescue with a difficult diagnosis – Joe Kochman’s story
Following a 32-year career in plant pathology R&D for agricultural and biosecurity applications I was well-versed in DNA-based diagnostic technologies. But I never imagined that at 68-years of age, I would be the topic of a difficult diagnostic investigation which required innovations in proteomics diagnostics. While undergoing prostate cancer [...]
From despair to hope: Neil and Linda Gibson’s experiences living with AL amyloidosis and raising money for amyloidosis research.
My name is Neil Gibson I was diagnosed in 2014 with stage 3 AL Amyloidosis. I had never ever heard of amyloidosis before this. My prognosis was not good, a matter of months and if it hadn’t been for the CCC, Carmel in 2E outpatients in PAH, convincing me [...]