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
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]