Transforming Sjögren’s Care Together Knowledge Exchange 2024

A video of the event is available to watch back here:

“Fabulous event. First time since diagnosis (8 years ago!) that I felt seen & heard. I found myself nodding along to what all the speakers had to say & the voice of the patient was clear throughout. Well done all involved.” Attendee

Our event opened with engaging discussions, beginning with Professor Michelle Flood, Principal Investigator on the SYNERG-IE programme. Michelle spoke about the programme’s objectives, introduced the research team and emphasised the transformative steps needed to improve care for those living with Sjögren’s. Following this, Dr Joan Ní Gabhann-Dromgoole led a dynamic panel discussion, inviting Sjögren’s Ireland founders Deirdre Collins, Eileen Sheehy, Gráinne Tynan and Monika Lauder to share their advocacy journeys, personal experiences with Sjögren’s and the story behind establishing their group. The conversation was both informative and inspiring, offering valuable insights into the group’s foundation and the impact they have made so far.

“Lovely to hear from patients and professionals on one platform.” Attendee

We then had the opportunity to hear from Dr Maria Gialama, a Clinical Health Psychologist and SYNERG-IE Postdoctoral Researcher, who spoke about the vital role of mental health support in managing Sjögren’s. Maria provided practical strategies for mental well-being while also acknowledging the daily challenges faced by those living with Sjögren’s and its complex symptoms. Her insights highlighted the importance of recognising both the physical and emotional impact of the disease.

“The mental health talk was very good and is useful for any condition (in) life, thanks for the information.” Attendee

During the morning break, attendees had the chance to connect and share experiences, with many meeting others living with Sjögren’s in person for the first time. It was truly heartwarming to see new friendships and support networks forming over a cup of tea. The atmosphere was warm and uplifting, as people were able to talk openly with others who understand what it’s like to live with the condition.

“I had never met anybody with Sjögren’s before, so [it was] helpful and reassuring to be with other people with the disease.” Attendee

Finally, we welcomed our Keynote speaker Dr Eoghan McCarthy, Consultant Rheumatologist and Clinical Lead on the SYNERG-IE programme who provided valuable insights into the treatment of systemic disease. Eoghan focused on key topics including the use of hydroxychloroquine (Plaquenil) and its effects on the eye, approaches to treating organ involvement and emerging therapies. The talk also highlighted ongoing and future clinical trials, providing insight into advancements in treatment for Sjögren’s and other chronic illnesses.

“Dr McCarthy was excellent and reassuring and [I] feel more confident about taking Plaquenil.” Attendee

Attendees shared overwhelmingly positive feedback about the presentations and speakers, with comments such as “I loved each and every one” and “engaging and informative”. Many expressed that the event left them feeling reassured that positive change is on the horizon for those living with Sjögren’s. They highlighted the growing interest from researchers, healthcare professionals and pharmaceutical companies—both in Ireland and internationally—as well as the strengthening sense of community among patients.

“I learned information that I never knew was a part of Sjögren’s, but I do suffer from. I love finding out that people care about Sjögren’s and will be working on it.” Attendee

We concluded the day with lunch in the Boardroom, where guests had the change to connect with others living with or affected by Sjögren’s. Attendees also engaged with poster presentations showcasing the work of SYNERG-IE and the achievements of Sjögren’s Ireland.

“It was great to meet other sufferers and hear their stories”. Attendee

For the SYNERG-IE team, it was particularly special to meet some of our PPI panel members in person for the first time. It was a fantastic opportunity to strengthen connections as we embark on exciting research together in the months ahead. Thank you to everyone who helped with the organisation of this event and to everyone who attended. We hope you found it as valuable and memorable as we did!

“It’s the first event I have attended with people who understand first-hand my experience in living with Sjögren’s”. Attendee

Mentioned resources:

https://www.sjogreneurope.org/

https://sjogrensresearch-ireland.eu/

https://sjogrensireland.ie/

https://www.arthritisireland.ie/

http://www.beaumont.ie/marc