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

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|

Crystal Lobban – My Father’s Story

The upheaval of Amyloidosis - Raising awareness in honour of my Dad My Dad was a very fit, healthy and active man who spent his days farming his beloved Angus cattle herd. The constant maintenance of keeping my parents farming properties in top shape had him out and about every day. He was also a very active member of the Victorian Farmers Federation and travelled around the state to [...]

By |January 13th, 2020|Patient Experiences|

Laurie O’Donnell’s story

Laurie O’Donnell wrote his moving story in October 2017 in the last few weeks of his life. Laurie O’Donnell was the  brother of Vince O’Donnell.  My name is Laurie O’Donnell.   I am 65 years of age and three and a half years ago after having neuropathy problems (peripheral nerve damage to hands and feet) and shortness of breath it was suggested that I go to a heart specialist whereupon [...]

By |July 22nd, 2019|Patient Experiences|

Ann’s story

I was diagnosed as a child with a disease called bronchiectasis. This chronic disease eventually caused my AA amyloidosis which affected my kidneys and eventually led to kidney failure. My kidneys had been failing for nearly 20 years so when in 2005 I was told I needed dialysis I thought I would take this all in my stride. How wrong I was as I suffered a huge grief reaction [...]

By |May 3rd, 2019|Patient Experiences|

Ken’s Story – An occipital stroke led to a diagnosis of AL amyloidosis

In September 2019, after a couple of days being out of sorts, my then 76 year old husband Ken suffered an occipital stroke . We were fortunately at the cardiologist at the time receiving the results of an echo cardiogram. The cardiologist immediately had Ken admitted into St Vincent's Hospital, Melbourne and brought in a neurologist. Over the next few days he underwent a series of tests including a [...]

By |February 17th, 2017|Patient Experiences|
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