A FAMILY who are coming to terms with a diagnosis of Hereditary Amyloidosis have shared their story this week in the hope of educating others about the condition. Before 2020 John Wilson had never heard of the life-threatening disease, which is also known as ‘Donegal Amy’ because of its prevalence in the county. This all […]
A huge sense of hope at Amyloidosis conference
THERE was a sense of hope in the air at the first Amyloidosis conference held in Gaoth Dobhair last weekend where patients suffering from the rare and serious condition heard of emerging new treatments. The event, fittingly called ‘Emerging from the Shadows’, was organised by ATTR Amyloidosis All Ireland and the Irish Heart Foundation. Until […]
Huge turnout at Amyloidosis conference
There was a huge turnout at the Amyloidosis conference in Gaoth Dobhair today. Close to 200 people attended the ‘Emerging from the shadows’ event to shine a light on the rare and serious hereditary condition. It is also called ‘Donegal Amy’ because of its prevalence in the county and is characterised by a build-up of […]
Sufferers of Donegal Amy produce documentary
SUFFERERS of the hereditary condition Amyloidosis have produced a short documentary to raise awareness ahead of World Amyloidosis Day. The video aims to raise awareness about the horrific disease, about the importance of early diagnosis and the treatments available. The video can be viewed here: https://m.youtube.com/watch?fbclid=IwAR0HKRi7YXPr8bHFjpCr1LyKcg6VA9tiiJ0RlGj9SxXeOk9lEQ6J2tXlNiA&v=5mWCxhTqfLM&feature=youtu.be Plans for an Amyloidosis conference in Gaoth Dobhair next […]
Life-saving drug to be made available within weeks
A LIFE-SAVING drug for Amyloidosis patients is to be made available within weeks. It is extremely welcome news for those in Donegal suffering from the horrific hereditary condition. Amyloidosis is caused by the build up of an abnormal protein in the body’s tissues and organs and the drug, Patisiran, is used as a gene silencer […]
Emotional day as life saving Donegal amy drug approved
A LETTERKENNY family who have been campaigning for a life saving drug for Amyloidosis patients to be made available in Ireland after losing two relatives to the hereditary condition have said it was a bittersweet moment when they got the news that the HSE has given the treatment the green light. Sisters Evelyn Cunningham and […]
High hopes cure for ‘Donegal Amy’ is in reach
TWO people from Donegal suffering from amyloidosis were among the first in the world to receive a groundbreaking gene editing drug that has the potential to offer a cure for the horrific disease. James Green, Burt and Patrick Doherty, Gaoth Dobhair took part in the first phase of a clinical trial led by the UCL […]
Family fight for life changing treatment to be made available
A DONEGAL family, who lost two relatives within weeks of each other to the hereditary condition Amyloidosis, are calling for a new life changing drug to be made available in Ireland. Letterkenny sisters Evelyn Cunningham and Bernie Cannon lost their mother Evelyn on June 3, 2017 aged 62, just eight weeks after their great-aunt Martha […]