April is Sjögren’s Awareness Month as such 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.
Despite being as common and as debilitating as other autoimmune diseases such as Crohn’s Disease and ulcerative colitis, many people including healthcare professionals 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.
Prior to the initiation of the Sjögren’s Research Ireland partnership there was no charity or support group specifically dedicated to Sjögren’s in Ireland, and patients had to resort to joining overseas groups in the UK and USA for reliable, up to date information. Similarly, there are currently no specialist Rheumatology clinics for Sjögren’s patients in Ireland, and patients often report frustration with having to educate medical professionals themselves. Additionally, there was no central hub for information or platform where patients could indicate an interest to become involved in research.
Sjögren’s patient advocate Deirdre Collins and Dr Joan Ní Gabhann-Dromgoole began their collaboration to address the significant unmet need for improved education of the public and healthcare professionals regarding Sjögren’s. As part of this journey they have developed important collaborations with Théa Pharma, the Acuity Foundation and RCSIs PPI Ignite Network Office. While their work is still on-going they have received incredibly positive feedback from many patients who have attended their education events or visited their website.
Their website resources and initiatives have been described as ‘ a light in the darkness’ …’providing the first platform for many to meet others living with Sjögren’s’ and have ’helped many feel they were not losing their minds or that they were all alone’ all of which is critically important as Sjögren’s is referred to as an invisible disease. Thus, their partnership and awareness campaigns are helping to shine a light on Sjögren’s.
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