Well-known faces show support ahead of World Amyloisis Day
Campaigners across the North West have been highlighting World Amyloidosis Day, which takes place this October 26 and have stressed how early diagnosis is still key.
The Attr Amyloidosis All Ireland Support Group, which is based locally, have enlisted well-known Donegal faces such as singer Daniel O’Donnell and former Republic of Ireland goalkeeper Paddy Bonner to highlight the disease ahead of the international awareness day.
There are many different strains of Amyloidosis, but hATTR Amyloidosis is known as ‘Donegal Amy’ due to its origins among a 15 mile stretch of coastline in the county.
The local campaign and awareness group were celebrating recently after receiving confirmation that the Executive Management Team of HSE had approved life-saving treatment Patisiran for patients in the South. The group headed a long-running campaign to ensure the treatment - which is available in the North - was made available to all who needed it.
According to campaigner Rosaline Callaghan, its approval meant that the ‘devastating disease in all its full-blown fury is no longer the death sentence it once was.’
As part of World Amyloidosis Day, the group has created a short documentary, highlighting what Amyloidosis is, their own experiences and the treatments available.
Rosaline, who lives in Derry, outlines her diagnosis and how she has been receiving Patisiran treatment for the last four years. She tells how the landscape for those with Amyloidosis - 50,000 are affected worldwide - was ‘previously very bleak up until a few years ago,’ but this has ‘changed in recent years.’
Evelyn Cunningham also appears in the documentary and she speaks of her mother’s journey to diagnosis. She also tells how the fact her mother held on for a diagnosis meant that her own family were able to know to get tested. Many amyloidosis patients face diagnostic delay.
Burt man James Green also tells his story and outlines his research into genetic testing.
James and Paddy Doherty, from Gweedore, tell of their experiences on the gene-silencing Crispr trial, led by the UCL Amyloidosis Centre in the Royal Free Hospital in London.
Paddy tells the documentary how early diagnosis is ‘key’ and this is where ‘genetic testing comes to play.’
Rosaline outlines in the documentary how everyone involved want to raise awareness of Amyloidosis to the general population and stresses how, if someone believes they, a family member or friend, may have symptoms, to contact the group, who have a support page and a general public page on Facebook.
She tells how, with the group’s support, no-one is ever alone and the ‘landscape is not as bleak or dark as it once was.’
Jeremy Fitz Howard, Manager of the Regional Cultural Centre who helped get funding for the documentary through Creative Ireland said: “We were delighted to be able to support James Green and Amyloidosis Ireland by introducing him to an excellent local filmmaker and assisting in the funding application to make this short documentary.
“James is doing hugely important work by highlighting such an important issue and by collaborating with local creatives, these personal stories can now reach global audiences.”
You can access the Support Group at https://www.facebook.com/groups/ATTRAmyloidosisIrelandSupportGroup. The Awareness Page is available at https://www.facebook.com/groups/ATTRAmyloidosisIrelandSupportGroup. You can watch the documentary at https://www.youtube.com/watch?v=y06eQlu2H2U. World Amyloidosis Day is organised by Amyloidosis Alliance and patient organisations.