aan

/Australian Amyloidosis Network

About Australian Amyloidosis Network

Enhancing awareness and early diagnosis of Amyloidosis

TTR Amyloidosis, A webinar, UKATPA, December 1 UK, December 2 AUS

The UK ATTR Amyloidosis Patient Association is organising a free webinar. Topic: "Diagnosing ATTR Amyloidosis" Speakers: Professor Juliane Gilmore and Professor Philip Hawkins from the National Amyloidosis Centre, Royal Free Hospital, London, will speak on Neuropathy and cardiomyopathy. Date : Wednesday December 1 at 5pm UK time. PLEASE NOTE this is [...]

2021-11-30T09:26:38+00:00November 30th, 2021|Uncategorized|

A diagnosis of Localised amyloidosis – My story

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 [...]

2021-11-19T10:10:47+00:00November 14th, 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 [...]

2021-09-23T10:30:24+00:00September 23rd, 2021|Patient Experiences|

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 [...]

2021-08-17T15:14:52+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|

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|