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/Australian Amyloidosis Network

About Australian Amyloidosis Network

Enhancing awareness and early diagnosis of Amyloidosis

David Boyle – How agreeing to take part in a treatment trial changed my life

I have been an active sportsman throughout my life and although a few kilograms overweight as I moved into my sixties, I have maintained a good physical condition through regular running and attendance at the gym. In early 2017 I was consistently running 10kms in around 35 minutes.  September [...]

2021-08-03T11:15:18+00:00August 3rd, 2021|Patient Experiences|

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. [...]

2021-06-16T22:10:30+00:00June 16th, 2021|Patient Experiences|

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 and a [...]

2021-05-31T10:57:02+00:00April 21st, 2021|Patient Experiences|

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 [...]

2021-02-04T17:50:09+00:00February 4th, 2021|Patient Experiences|

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 [...]

2021-04-21T10:10:01+00:00December 21st, 2020|Patient Experiences|

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 [...]

2021-06-30T12:09:44+00:00December 7th, 2020|Latest News.|

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 [...]

2020-12-06T10:10:57+00:00November 6th, 2020|Patient Experiences|

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 [...]

2020-10-07T09:20:09+00:00October 6th, 2020|Patient Experiences|

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 [...]

2020-10-07T22:38:57+00:00August 24th, 2020|Patient Experiences|

Geoff and Ros Phillips’ story: Living with a rare type of hereditary amyloidosis

Geoff's story Geoff Phillips has a type of hereditary amyloidosis known as AGel or Gelsolin amyloidosis. My first possible problem with amyloidosis was around 14 years ago when I had a hospital visit with a bad case of Cellulitis. Blood test showed a problem in the blood tests, no [...]

2020-10-07T09:21:27+00:00July 16th, 2020|Patient Experiences|