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 [...]

2022-09-06T11:39:20+10:00June 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 [...]

2020-10-07T09:18:23+11:00January 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 [...]

2020-03-29T20:42:30+11:00July 22nd, 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 [...]

2022-02-21T16:25:31+11:00February 17th, 2017|Patient Experiences|
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