Patient Experiences

Amyloidosis and Multiple Myeloma – Susan’s Story

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 [...]

2024-12-15T13:43:27+11:00December 15th, 2024|Patient Experiences|

Cath Davies – This is my amyloid journey!

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, [...]

2024-11-16T09:45:44+11:00November 16th, 2024|Patient Experiences|

My Amyloid Journey – Chris’s Story

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 [...]

2023-09-07T09:42:41+10:00June 21st, 2023|Patient Experiences|

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+11:00November 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+10:00September 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+10:00August 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+10:00June 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+11:00February 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 [...]

2023-06-05T12:32:07+10:00December 21st, 2020|Patient Experiences|

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+11:00November 6th, 2020|Patient Experiences|
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