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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 [...]

2020-07-16T12:35:21+00:00July 16th, 2020|Patient Experiences|

Vince Represents Australian ATTR patients on the world Amyloidosis Alliance

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 [...]

2020-06-22T12:03:26+00:00June 22nd, 2020|Patient Experiences|

A Difficult Journey to a Diagnosis of AL Amyloidosis

“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 [...]

2020-04-06T16:06:11+00:00April 6th, 2020|Patient Experiences|

Coronavirus: Instructions for amyloidosis patients

Hi everyone,Just wanted to check in and see how everyone is doing with the COVID-19 (coronovirus) pandemic restrictions.It's a crazy time. And it can be scary - that's OK. We will all have anxious moments, they will come and go.These tough times will also pass, but tough people will [...]

2020-03-29T12:25:39+00:00March 29th, 2020|Latest News.|

AL, early remission and a heart transplant – Robin’s Story

My journey - from an active 57 year old cycling 250 km a week, completed his first triathlon, trekking in Nepal and Patagonia, an avid skier and traveling the world - to a 62 year old recovering from a heart transplant following a 4 year battle with AL Amyloidosis. [...]

2020-03-02T22:07:41+00:00March 2nd, 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 [...]

2020-01-24T17:30:43+00:00January 13th, 2020|Patient Experiences|

Coral – My 17 years Living with AL Amyloidosis.

My Name is Coral and my symptoms started on boxing day 2001 when I woke with swollen ankles and a pain in my chest. A visit to A&E, admission to hospital and a kidney biopsy confirmed the diagnosis of AL amyloidosis. I was 39 years old and had until [...]

2019-12-10T22:19:46+00:00November 22nd, 2019|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.|