“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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
