Sjögren’s syndrome
Georgie PURCELL (Northern Victoria) (18:48): (1575) My adjournment matter this evening is for the Minister for Health, and the action I seek is for her to meet with Sjögren’s Australia, a newly formed organisation advocating for better awareness, understanding, support and research for people suffering with this hugely misunderstood chronic illness. This is a matter that is incredibly close to my own heart. It is not something that I speak of often, but I was just 26 years old when I was diagnosed with Sjögren’s syndrome. It came with a huge sense of relief to finally have answers to the symptoms and years of mystery hospitalisations. But it also came with a huge sense of sadness, knowing there is no cure and that it is a progressive condition, meaning that it only worsens with age. A Google search of Sjögren’s will tell you that it is an autoimmune disease that is categorised by dry eyes and mouth, which is something that deeply frustrates and minimises the experiences of Sjögren’s patients, because it is so much more than that. It is a chronic and rheumatic condition, also categorised by persistent fatigue, chronic pain and swollen glands. It affects the joints, the thyroid, kidneys, the liver, lungs, skin and nerves. Those with Sjögren’s have a significantly increased chance of lymphoma, and as an illness that primarily affects women, it can create pregnancy complications, such as congenital heart block, foetal loss, preeclampsia and premature delivery. The worst part of this illness is that it is invisible. Despite being so open about parts of myself and the obligation I feel to share my lived experience in this role to help others, it is one of the things that I struggle to communicate about the most.
Patients are misunderstood as we often present healthy and well, while inside our bodies are literally attacking themselves every single day. Like all illnesses that cannot be seen, it makes managing work, parenting, relationships and everyday life hard, especially in the instance of flare-ups, a sudden and rapid onset of increased symptoms that can be debilitating.
Like so many autoimmune diseases, there is limited understanding of Sjogren’s syndrome. Diagnosis is difficult, expensive and long, and funding for research or treatment is minimal. As a community we rely on each other for support, solidarity and understanding as we operate in a world that does not see or sometimes acknowledge our suffering in silence. The government can fix that by opening the door to this conversation. I truly hope that the minister can meet with Sjogren’s Australia to learn more about this chronic illness affecting Victorians and to discuss the inclusion of Sjogren’s syndrome in public health agendas and the expanding of funding, including for medications, treatments and financial assistance for patients, as well as research to make the lives of people with Sjogren’s syndrome just a little bit more comfortable.