Amyloidosis Ireland
My name is Ann Deegan, and I am one of six children. Four of us have the hereditary amyloidosis Thr60Ala gene. It was the early 90s when I first heard of Familial Amyloid Polyneuropathy. My mum had been diagnosed in St Vincent’s Hospital in Dublin and at that stage, her prognosis was guarded. As a … Read more
The breathlessness Paddy experienced on a hillside walk in the autumn of 2020 wasn’t his first sign of heart trouble, but it was the one that finally got him to go to the doctor.
Bernie Cannon-Cunningham and Eibhlin Cunningham are from Letterkenny, Donegal. “Amyloidosis burst into our lives in 2017. Until then, we had been tormented and bewildered as to what could be wrong with our mum”.
By mid-2020, I had the genetic test, cardiac tests and nerve conduction studies, which confirmed I had inherited the mutant gene from my mum.
Whilst I do not carry the faulty gene, hereditary amyloidosis is now part of my own, and my family’s, history. I am writing these few words as a testament to my personal journey.