Most people don’t know about Sjögren’s disease, how to pronounce it (SHOW-grins), or what the symptoms are.
That’s why Dr Adrian Lee, a Clinical Immunologist from Westmead Hospital, is so passionate about advocating for awareness of the disease.
Sjögren’s disease is not a common condition, and it predominantly affects women.
Symptoms typically become evident in middle age such as inflammation of the salivary glands causing mouth dryness, lung inflammation, dry eyes, tiredness, and joint pain.
“A lot of these symptoms are quite invisible, so people walk around essentially suffering without any cures or effective therapies,” Adrian said.
So how do you spot the invisible?
“Sjögren’s can sometimes be picked up on blood tests; there are certain markers which help to diagnose this,” Adrian said.
“Ultimately, our Department is doing research to help improve the patient’s journey and the care that they receive at the end of the day,” Adrian said.
Sofia Diab is one of Adrian’s patients who was diagnosed with Sjögren’s disease 14 years ago.
“I don’t recommend patient’s use Google upon diagnosis as the information can be both overwhelming and confronting. Speak to your doctor instead,” Sofia said.
Sofia is passionate about using her voice to help others who have the disease.
“I don’t think enough men or women know about it. It would be beneficial if there was more information about Sjogren’s because most people haven’t even heard of this disease, or they don’t know enough about it. We need to increase awareness,” Sofia said.
A recurring sore on her lip prompted further tests, but she says it can be difficult to get a diagnosis as so many of the symptoms are the same or similar to those of perimenopause.
While the symptoms of Sjögren’s may seem common, the impact on her has been dramatic.
“When we talk about dryness of the mouth, it literally feels like sandpaper in your mouth and that’s why hydration is so important. We need to look after our teeth,” Sofia said.
The dryness in her eyes makes her hypervigilant of any variables in the environment around her, from wind to air conditioning to sunlight.
“It feels like grains of sand inside your eyelid, and the only way to relieve the discomfort is to use an eye drop to combat the dryness,” Sofia said.
She says that confidence and trust in both her GP and her specialist, Dr Adrian Lee, have been pivotal to her health journey.
“Open communication is extremely important when it comes to your doctor patient relationship,” Sofia said.
“Your health specialist needs to know exactly where you are when it comes to your symptoms, general health, and your mental health. This is to ensure that the proper advice and treatment is offered to you. Transparency is key,” Sofia said.
This trust is a driving factor for Adrian Lee, who recalls the first time he saw Sjögren’s disease.
He was a student in medical school and at the time.
“That case had an important impact on me as a naive and impressionable student, and I think it’s a good reminder for me even to this day of why we need to know about and diagnose Sjögren’s disease nice and early,” Adrian said.
he patient’s diagnosis was not recognised for many years and she later suffered from severe complications from the disease.
“It was later when I graduated and put two and two together, I realised the patient actually had Sjögren’s disease,” Adrian said.
This case had a profound impact, and Adrian has spent the past 10 years advocating for more research and awareness.
Sofia follows Adrian’s expertise and guidance, regularly attending reformer Pilates and other strength training sessions to mitigate the symptoms, with her three kids being a huge source of both motivation and inspiration.
“When you have important responsibility’s such as children and work, you can’t just dismiss them due to symptoms like fatigue. You have to get on with it, you have to make the decision to continue fulfilling your commitments,” Sofia said.
“I don’t want Sjögren’s Disease to be in the forefront of my life. No matter how tired I am feeling, I choose to get on with things. That’s the mindset that keeps life feeling normal,” Sofia said.
If you or someone you know has Sjögren’s disease, you can reach out to support groups at Sjögren Australia.