What is Sjögren’s disease?
Sjögren’s disease is a serious, progressive, systemic autoimmune disease, meaning it can affect the entire body rather than just one area.1-4 It affects glands that release secretions, such as tears and saliva, causing dryness, and also affects multiple organs and systems, causing inflammation and tissue damage, impacting the entire body.3,5-7
- In some geographies, it affects approximately 0.25% of the population3,8
- Global incidence and prevalence rates are often underestimated due to underdiagnosis and misdiagnosis due to nonspecific symptoms2,3,8-10
- It is 9 times more common in women than men2
- In some geographies, an estimated 50% of patients remain undiagnosed3,8
- It is considered the second most prevalent rheumatic disease1
About the condition
What are the symptoms of Sjögren’s disease?
Beyond the more easily recognizable symptoms, such as excessive dry eyes and mouth, over 9 out of 10 patients report experiencing at least one other systemic symptom of Sjögren’s.11 These can affect many parts of the body, including:2,4,12-16
- Joints, causing chronic pain
- Nerves, causing numbness or memory issues
- Lungs, with scarring in about 1 in 5 patients
- Kidneys, with inflammation in about 1 in 3 patients
- Increased risk of developing lymphoma – a type of cancer
- Severe fatigue
As Sjögren’s can affect so many organs, it is now seen as a full-body, or systemic disease – not just one that causes dryness.4
Patients may also experience neurological symptoms, with almost 4 out of every 10 patients reporting ‘brain fog’, referring to slowed thinking, poor concentration and slowed responses.11
How does the immune system dysfunction cause Sjögren's symptoms?
Sjögren’s is a B cell–driven disease in which overactive B cells infiltrate, target and attack parts of the body, producing autoantibodies and antibodies that cause inflammation and damage.5-7
The abnormal B cells and the autoantibodies cause inflammation and dysfunction of certain glands, leading to the characteristic symptoms of dry eyes and dry mouth. The inflammation can also happen in other organs and tissues in the body, resulting in wider systemic complications.6,16
As B cells are thought to play a key role in Sjögren’s, a therapy that can effectively target B cells can potentially reduce the disease burden.7
What impact does Sjögren’s have on everyday life?
The considerable discomfort and limitations caused by Sjögren’s can result in a decline in physical, mental, and social wellbeing.4,9,11,15 In fact, in a recent study exploring the experiences of people living with Sjögren’s:11
- 58% of people reported a high impact on emotional well-being.
- 48% of people documented that their daily activities were widely affected by the condition
- 47% shared that their work was impacted.
Ana Vieira, who lives with Sjögren’s and is also the Vice President of Sjögren Europe, shares how the disease affects her working life and its emotional impact.
The disease has a massive impact in my professional life. Because there is brain fog, difficulties in concentration, difficulties in speech, slow thinking, forgetfulness, and there is this whole graveyard of unmet timelines. So, you don’t deliver as you are expected. And this generates a massive emotional impact.
Watch the full video below to learn more about Ana’s personal journey of living and working with Sjögren’s.
Why is Sjögren’s often difficult to diagnose?
Because Sjögren’s can show up in many different ways and affect multiple parts of the body, it’s often missed or mistaken for something else.9,10 This means people may wait a long time before getting the right diagnosis and treatment, which can make their symptoms worse and delay proper care.3,9,10,17 The mean age at diagnosis ranges from 52 to 62 years.18
Sjögren’s is 9 times more common in women than men.2 While researchers are not certain why more women than men develop Sjögren’s, they are investigating genetic, hormonal, and environmental factors.19
How is Sjögren’s currently managed?
Sjögren's management continues to focus on relieving symptoms rather than getting to the underlying systemic causes.4 This often only provides temporary and partial symptomatic relief, highlighting the need for effective disease-modifying treatment.4,20
Reflecting these limitations, in a recent study:11,21
- 94% of patients living with Sjögren’s were not fully satisfied with the available range of therapies
- Preventing disease worsening is a main treatment goal for people with Sjögren’s
What are some questions you can ask your doctor?
- How should I track my symptoms between appointments?
- How might Sjögren’s affect my health over time?
- How might Sjögren’s affect different parts of my body beyond dryness?
- What warning signs or symptoms should I watch for, and when should I seek help quickly or urgently?
- Where can I find trusted information and support for people with Sjögren’s?
Hear from the Sjögren’s community:
Sjögren's is very difficult to live with. You don't realise how much of your body is involved. It's a serious systemic disease that's not taken seriously enough, and it does progress over time. Eyes are impacted, teeth are impacted, and it can hit any organ system in the body.
Linda Stone, Sjögren’s UK