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/Australian Amyloidosis Network

About Australian Amyloidosis Network

Enhancing awareness and early diagnosis of Amyloidosis

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 [...]

2020-10-07T09:21:27+00:00July 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 [...]

2021-07-31T18:14:09+00:00June 22nd, 2020|Patient Experiences|

Expert consensus recommendations to improve diagnosis of ATTR amyloidosis with polyneuropathy

Authors David Adams Yukio Ando João Melo Beirão Teresa Coelho Morie A. Gertz Julian D. Gillmore Philip N. Hawkins Isabelle Lousada Ole B. Suhr Giampaolo Merlini Abstract Amyloid transthyretin (ATTR) amyloidosis with polyneuropathy (PN) is a progressive, debilitating, systemic disease wherein transthyretin protein misfolds to form amyloid, which is deposited in the endoneurium. ATTR amyloidosis with PN is the most serious hereditary polyneuropathy [...]

2020-01-14T17:54:26+00:00January 14th, 2020|Latest News.|

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+00:00January 13th, 2020|Patient Experiences|

2nd European meeting for ATTR amyloidosis

Reports from the 2nd European meeting for ATTR amyloidosis for doctors and patients from the NZ ATTR Amyloidosis Patients Association and the Australian ATTR Amyloidosis Alliance representative. This very successful fourday conference was held at the beginning of September in Berlin. Amongst the delegates were Jaime and Aubrey Christmas who [...]

2019-10-17T09:38:09+00:00October 17th, 2019|Latest News.|

2019 International Myeloma Workshop

The International Myeloma Workshop was held in Boston, USA from 12th-15th September 2019. This is a conference attended by >3000 medical professionals every 2 years, where world leaders in the treatment of myeloma and associated disease - such as systemic AL amyloidosis - present and discuss data regarding new [...]

2019-09-22T18:15:56+00:00September 22nd, 2019|Latest News.|

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+00:00July 22nd, 2019|Patient Experiences|