PARE0003 MY RA STORY - PERSONAL ACCOUNTS OF LIVING WITH RHEUMATOID ARTHRITIS

Abstract

Background: Over 2,000 people are diagnosed with rheumatoid arthritis (RA) in Ireland each year; three in four are of working age. In total, RA affects some 45,000 people in the country; 70 per cent of whom are women. For someone newly diagnosed with RA, coming to terms with the news can seem overwhelming. Such a dramatic shift in life circumstances can impact one's physical and mental well-being. While there is no shortage of information available about the condition, it can be overwhelming trying to filter this, assess what is trustworthy and reliable. Objective(s): *To provide information and hope to people newly diagnosed with RA, and to give a voice to those living with the condition; *To increase awareness and understanding of RA-encourage engagement with HCPs, contributing to early diagnosis and better outcomes; *To increase awareness of work of Arthritis Ireland as a patient organisation. Method(s): Arthritis Ireland approached best-selling author and RA patient, Sinead Moriarty, to front an RA awareness campaign, called My RA Story. The purpose of the campaign was to increase awareness and understanding of rheumatoid arthritis, of what it is like to live with this chronic condition with its invisible pain and life-changing impact. In so doing, Arthritis Ireland wanted to give a platform to people to tell their own story, so that they could be heard. We then wanted to publish these experiences in book form. In April 2019, we launched a video on social media featuring Sinead Moriarty speaking about her experience of living with RA. The video generated lots of engagement across social media and also helped garner national and regional media coverage in print and broadcast. The call for RA stories received a fantastic response from the public and the reading panel had a tough job in selecting the contributions which would feature in the published volume. Once the successful contributions were chosen, Arthritis Ireland proceeded to design a book, which could be sold in the book trade and online. Result(s): In September 2019, Arthritis Ireland published My RA Story: Personal accounts of living with rheumatoid arthritis. Launched in the National Library of Ireland by Sinead Moriarty, the 46 contributions touched upon themes of pain, fatigue, emotional impact, disability, surgery, education, career, family, goal-setting, self-management, connecting with others, hope, etc. The contributors came from people who were living with RA for over 40 years, as well as from those who were more recently diagnosed. The book is a hugely valuable contribution to health literature. Arthritis Ireland now plans to make the book available for sale internationally, through Amazon and other retail channels, as well as promoting it more extensively in rheumatology clinics. In October, one of the contributors was interviewed on national television about her RA story, as part of a feature on World Arthritis Day. Conclusion(s): This campaign gave people living with RA a platform to write about and share about their condition. Fronted by an RA champion with significant name recognition and an enormous audience in her own right, best-selling author, Sinead Moriarty, the book, My RA Story. Crucially, the book is a valuable resource for people who are newly diagnosed with the disease and uncertain of what the future holds.