“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, [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 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 [...]

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 [...]