Today is World Amyloidosis Day and Rosaline Callagan, who has been diagnosed with the hATTR Ala 60 strain of the hereditary condition, is keen to improve understanding of the illness.
‘Donegal Amy’ is believed to originate from a 15 mile stretch of coastline in the county and it has been suggested it traces back to Conal Gulban, the son of Niall Noígíallach (Niall of the Nine Hostages) and the great-grandfather of Colmcille.
It is estimated up to one per cent of the population of Donegal may have the condition with obvious implications for Derry.
Martin McGuinness passed away from the illness in March 2017.
Rosaline lost her aunt, father and cousin to the illness but wants to highlight the importance of early diagnosis.
“This devastating disease in all its full-blown fury is no longer the death sentence it once was,” she said.
Rosaline points to the drugs patisiran (Onpattro) and inotersen (Tegsedi) that have been shown to significantly reduces disability and improves quality of life. As part of World Amyloidosis Day, Rosaline and the Donegal and Derry-based Attr Amyloidosis All Ireland Support Group group have created a short documentary, highlighting what Amyloidosis is, their own experiences and the treatments available.
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. She says the ‘landscape is not as bleak or dark as it once was.’
Burt man James Green also tells his story in the documentary and outlines his research into genetic testing.
Jeremy Fitz Howard, Manager of the Regional Cultural Centre who helped get funding for the film 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.”
Sinn Féin MLA Pádraig Delargy, who is supporting the campaign, said: “I would like to commend Rosaline for the efforts she has made in highlighting the Amyloidosis awareness campaign in the NW. Trying to get a profile of such campaigns is very hard so we are all very pleased to be here today to lend our support. If this helps one person who feels they may have the symptoms to come forward and get checked out then it will have been worth it.”
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 the Amyloidosis Alliance and patient groups.