RCSI University of Medicine and Health Sciences has joined forces with a pioneering patients group to raise awareness of the auto-immune disease, Sjögren’s.

Sjögren’s (pronounced 'SHOW-grins') is a chronic debilitating autoimmune disease which affects approximately 1 in 200 people worldwide. Up to 1% of the population in Ireland is thought to suffer with the disorder, predominantly women aged between 40-50 years at time of diagnosis.

Academics from RCSI’s Ocular Immunology Research Group have collaborated with the Sjögren’s Ireland patient advocacy group to launch Ireland’s first awareness campaign about Sjögren’s to assist people in receiving an early diagnosis. The campaign will see information posters being displayed in primary care centres such as GP practices, optometrists and dental surgeries throughout the country.

Dr Joan Ní Gabhann-Dromgoole, Scientific Lead for the Ocular Immunology Research Group and Senior Lecturer for School of Pharmacy and Biomolecular Sciences said: "Sjögren’s is as common and as debilitating as other autoimmune diseases such as Crohn’s Disease and ulcerative colitis, but many people mistakenly believe it to be rare and not as serious. This means that, people living with Sjögren's commonly experience a challenging diagnostic process, limited treatment options, chronic symptoms, and inadequate support."

In Sjögren’s, the body’s immune system that normally provides protection from infection, begins to attack parts of the body and in particular the specialised secretory glands called exocrine glands. For those living with Sjögren’s these glands become inflamed and are badly damaged. As a result the glands stop working causing severe dryness of epithelial and mucosal surfaces and leading to dryness of the mouth and eyes. Dryness of the eye surface causes many symptoms ranging from mild discomfort, irritation and vision distortion, to serve damage to the corneal surface. Dryness of the mouth can cause difficulties eating, swallowing and talking. Sjögren’s also often causes damage to other parts of the body including the lungs, kidneys, and nervous system.

People living with Sjögren's can also experience a wide range of systemic clinical symptoms that can potentially affect any organ system. Systemic extra glandular complications can include profound fatigue, skin rashes, chronic joint and muscle pain, an increased risk of lymphoma, and pulmonary complications ranging from mild reduction in lung function to severe complications such as idiopathic pulmonary fibrosis. At present, there is no way to predict which patients will go on to develop these disease associated complications. Furthermore, treatment options are reactive and limited. Sjögren's has a considerable impact on the quality of life of those affected, often impairing their ability to carry out daily activities and negatively affecting their work and social lives.

Dr Ní Gabhann-Dromgoole continued: "Sjögren’s is a very common condition but unfortunately patients experience substantial delays of 5-10 years in diagnosis due to lack of awareness amongst the public and education amongst medical professionals. During the course of our research, we became acutely aware that, for those affected by Sjögren’s, general practitioners, eye, and dental providers often encounter early signs of the disease but do not recognise them. This lack of familiarity with the disease deprives patients of getting a timely diagnosis and proper care and this is what we are aiming to address with our campaign."

Deirdre Collins who lives with Sjögren’s and is one of the co-founders of the Sjögren’s Ireland patient advocacy group said: ‘As someone who has been affected by this condition, I understand how debilitating it can be and how frustrating it is to have to wait so long for a diagnosis. We hope this campaign reaches out to people affected to let them know they are supported and empowers them to seek a diagnosis and treatment. From a healthcare professional’s prospective, the awareness campaign aims to ensure that Sjögren’s is at the forefront of doctors’, eye care and dental care providers’ minds when they are presented with common symptoms of the condition.’

The awareness campaign aims to achieve three core objectives:

• Raise awareness and understanding about Sjögren’s – Educate patients, the public and healthcare professionals by hosting webinars, advertising on social media and creating the first Sjögren’s information leaflet with information from Sjögren’s specialists, including patients.
• Direct research questions –Utilise our annual knowledge exchange events to share research updates and to ask attendees what areas they feel currently need attention to improve their medical care.
• Provide mutual support – Encourage those living with Sjögren’s to stay connected with the Sjögren’s community by joining the Sjögren’s Ireland mailing list and following the Sjögren’s Research Ireland webpage which will have the most up-to-date information on activities and initiatives that are being planned

For further information visit: sjogrensresearch-ireland.eu, twitter.com/SjogrensIrl, facebook.com/SjogrensIrl .

This initiative is supported by Théa Pharma.