Patient Experiences

Patient Experiences2022-10-18T11:25:40+11:00

Patient Experiences

Tell me a fact and I’ll learn. Tell me a truth and I’ll believe. But tell me a story and it will live in my heart forever.
North American Indian proverb

Personal stories written by those of you living with all types of amyloidosis are extremely important. These stories raise awareness about the different types of amyloidosis while educating the reader about what it is like to live with this group of rare devastating diseases.

Please keep sending your stories to be published on the web site.
Use the form on the right if you have a story you think others might appreciate hearing and we’ll get back in touch with you.

The power of storytelling | The Health Foundation

Submit a Story

Sue’s Story

My Amyloidosis Story My name is Sue Birdsall and I am 79 years old. In April 2016 I was diagnosed with AL Amyloidosis affecting my heart. I have intended to write my story for some time. Now seems particularly pertinent as I am currently in remission after 7 long years of chemotherapy. Though my Amyloidosis journey has not been easy I was fortunate to be diagnosed relatively early. The [...]

By |July 12th, 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 then Multiple Myeloma. My GP was highlighting my abnormal light chains for all that time to my 'specialist' both haematologists, [...]

By |June 21st, 2023|Patient Experiences|

Geraldine’s Story

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 having a laminectomy. In 2016 I started getting swelling in my legs, woozy episodes where I would stand up and [...]

By |September 12th, 2022|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 and a Mammogram and a biopsy of the worrying area on my right breast.  Six days later my stitches were [...]

By |November 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 and a left bundle block on ECG, which may it was said have been related to previous high blood pressure. [...]

By |September 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 By submitting our experiences of living with AL amyloidosis or if you have been treated with daratumumab, how that has [...]

By |August 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. As in many cases, the diagnosis of my Amyloidosis extended over 12 months and included many misdiagnoses which were not [...]

By |June 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 then been very active and healthy with 2 young children aged 9 and 13. We had never heard of amyloidosis [...]

By |February 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 said. But when the ride to work he did every day suddenly became a struggle, he felt something was wrong. [...]

By |December 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 enjoyed the occasional drink. During 2015 the situation started to deteriorate. With my smoldering myeloma I was treated for anaemia, [...]

By |November 6th, 2020|Patient Experiences|
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