Sjögren’s [SHOW-grins] disease is a systemic autoimmune condition. It's thought to be caused by your immune system mistakenly attacking the body instead of protecting it. This triggers too much inflammation and can cause symptoms across your whole body, from dry eyes to joint pain. Everyone’s experience with Sjögren’s disease is different and no two stories are the same.

Sjögren’s disease used to be called Sjögren’s syndrome. A syndrome is a collection of symptoms with no known cause. The name was changed to Sjögren’s disease to reflect that it's an autoimmune disease that may have serious health risks.

Although we do not know the exact cause of Sjögren’s disease, its symptoms can be caused by inflammation related to overactive B cells. B cells are cells in the body that are responsible for regulating the immune system and making antibodies that protect the body against infections and disease.

An important protein in the immune system called BAFF (B-cell activating factor) is often much higher than normal in Sjögren’s disease. BAFF helps B cells grow and survive, and can lead to even more inflammation and potential damage to organs.

While anyone can get Sjögren's disease, it tends to be more common in women. About 9 out of 10 adults with the condition are women. The average age at diagnosis is 45 to 55 years.

Yes, Sjögren’s disease can be a slowly progressive condition, meaning it can get worse over time if left untreated. It can lead to long-term joint and organ damage (such as kidney failure or interstitial lung disease). It can also increase your chances of developing certain kinds of cancer, such as lymphoma.

There are currently no cures for Sjögren’s disease. The lack of FDA-approved treatment options can be especially frustrating for patients who’ve seen multiple providers and lived without sufficient treatment for years. But there is promising research for potential new treatment options.

FDA, US Food and Drug Administration.

Sjögren’s disease is a chronic condition, so your symptoms may keep coming back or never fully go away. However, there are some ways to manage your symptoms, like eye drops and nonsteroidal anti-inflammatory medications, such as aspirin and ibuprofen.

Currently, clinical trials and research are ongoing to better understand Sjögren’s disease and develop effective treatments for the disease.

Dryness (or sicca) in the eyes, mouth, and other parts of your body is the symptom most closely associated with Sjögren’s disease, but it can affect your entire body. Other common symptoms include fatigue, brain fog, and muscle and joint pain.

Sjögren's disease symptoms can start with damage to moisture glands in your body. While most people with the condition may experience dryness, not everyone has this symptom.

Sjögren’s disease affects everyone differently. So it can be difficult to connect the dots between the many seemingly unrelated symptoms you experience. Keeping track of all your symptoms and talking about them with your doctor can help.

Because Sjögren’s disease can affect different parts of your body in different ways, it helps to keep track of your symptoms. This can help both you and your doctor see the bigger picture of how it’s impacting your body and your life.

Nobody knows what you’re experiencing better than you. Even if your symptoms may seem unrelated, it’s important to speak up and let your doctor know.

Sjögren’s disease can affect everything you do, every day. Sometimes this means having low energy at work or having to cancel plans. Other times, you could find yourself dealing with unexpected dental bills or frustration in your sex life.  

Some of these topics may not be easy to talk about. Not sure where to start?

Sjögren's disease can be challenging to diagnose. There is no single test for Sjögren's disease. If your doctor suspects Sjögren's disease, they may test a sample of your blood or measure the moisture levels in your eyes and mouth. Some of the more common blood tests include antinuclear antibodies (ANA), rheumatoid factor (RF), and SS-A or SS-B tests. But even if you test negative on an SS-A or SS-B test, you may still have Sjögren’s disease.

Another test commonly used to diagnose Sjögren’s disease is the Schirmer's test, which measures tear production in your eyes.

On average, it takes people about 3 years from experiencing their first symptoms to being diagnosed with Sjögren’s disease. For many people with Sjögren’s disease, symptoms don’t start until middle age, but they can also start as early as childhood.

Sjögren’s disease can be challenging to diagnose. There is no single test for Sjögren’s disease. If a doctor suspects Sjögren’s disease, they may run a combination of different tests involving your moisture levels or blood. Symptoms vary from person to person and may need to be treated by different kinds of doctors. Because it is a systemic condition that can affect your whole body, it helps to talk to a rheumatologist if you think Sjögren’s disease may be a possibility.

Advocating for yourself and keeping an accurate record of the full range of symptoms you experience can help you reach your diagnosis sooner.

Before diagnosis, you may find yourself seeing different doctors to help with different symptoms (like a dentist for dental issues or an ophthalmologist for dry eyes). But the doctor who can best help you get to the correct diagnosis—and help you manage the full range of symptoms you’re experiencing—is a rheumatologist.

Rheumatologists specialize in autoimmune conditions that affect joints, muscles, and organs.

Doctors measure the impact of Sjögren’s disease by looking at how it affects you from head to toe. They will look at the disease activity across all parts (or systems) of your body, including joints, lungs, nervous system, and more. This helps them see the bigger picture of how Sjögren’s disease is affecting your entire body.  

Keeping track of your symptoms can help your doctor with this process.

While there are ways to help you manage individual symptoms, there are currently no FDA-approved treatment options that treat the cause of Sjögren’s disease. Currently, clinical trials and research are ongoing to better understand Sjögren's disease and develop effective treatments for the disease.

FDA, US Food and Drug Administration.

There are ways to manage the individual symptoms you experience. For example, your doctor may prescribe nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, to help with joint pain or eye drops to help with dry eyes.

It’s important to always talk with your doctor about how Sjögren’s disease is affecting you. Letting them know the full impact can help you work together to find a treatment plan that’s right for you.

You can find support resources, a list of patient advocacy groups, and more on the Tools and Community Resources page. You can also check out the #SjoutForSjogrens hashtag on social media to see what other people with Sjögren’s disease are saying.