Hello and welcome to our AAN blog designed to post items by you and for you, about all things amyloid ! We welcome blog submissions from all quarters of our amyloid community. You can be a patient, a Dr or simply someone passionate about this thing called amyloid. The AAN [...]
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 [...]
Vaccination is vital to help control COVID-19 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 Coronavirus and we want the Australian state borders to remain open, it is extremely important [...]
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 [...]
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 [...]
Find and share the stories of real people around Australia and their personal experiences of Amyloidosis.
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 [...]
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 [...]
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. [...]
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 [...]
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 [...]
“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 [...]
