Patient Experiences

/Patient Experiences
Patient Experiences2020-01-09T17:41:21+00:00

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

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|

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 treatment in 2015, amyloid deposits were detected in my prostate gland biopsy. This chance finding led to further investigation and [...]

By |October 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 to start chemo, as I was a bit reluctant in the beginning, I would not be here today playing golf [...]

By |August 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 one knew what it was so they said don’t worry it must be an infection. This happened another 4 times [...]

By |July 16th, 2020|Patient Experiences|

Vince: His journey with hereditary ATTRv amyloidosis and helping others.

I am Vince O’Donnell. I have a slow but fatal genetic condition known as hereditary ATTR (ATTRv) Thr60Ala Amyloidosis with cardiomyopathy, once known as Familial Amyloidosis Cardiomyopathy (FAC) or familial amyloid poly neuropathy (FAP) Hereditary ATTR is a condition that can be passed down to male or female children from the mother or father with a 50% chance of any child receiving the mutated/abnormal gene. So even if a [...]

By |June 22nd, 2020|Patient Experiences|
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