A Difficult-to-Diagnose Autoimmune Disorder Called Sjögren’s Disease

The main symptoms, dry eyes and mouth, are commonly mistaken for other conditions

Angela Myers,

AARP

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En español

Published July 11, 2025

It took years for Janet Church to receive a correct diagnosis of Sjögren's disease. She now works for the Sjögren's Foundation.

Ryan Donnell

Since she was in her early teens, Janet Church suffered from glandular swelling, fatigue, migraines and frequent sinus infections. When she became an adult, the symptoms grew so severe, she had to take a step back from her career. When her severe migraines, neurological symptoms and fatigue persisted, she was eventually hospitalized with aseptic meningitis.

After years of mysterious symptoms and scores of tests by dozens of doctors, she finally saw a rheumatologist who diagnosed her with Sjögrens disease, an autoimmune disorder that is more common than rheumatoid arthritis or lupus but is often misdiagnosed.

“While waiting for a formal diagnosis, my doctor put me on steroids, and I immediately felt better,” Church says. “And when my test results came back, he just said, ‘You have Sjögren’s. You're lucky you have the easy autoimmune disease.’ And I thought, How was being hospitalized for a month easy?”

Church then switched to a rheumatologist with more expertise in treating Sjögren’s. With the right diagnosis and specialist, she was able to begin managing her symptoms. She got involved with the Sjögren’s Foundation, serving on the board of directors and eventually assuming her current role as CEO, to raise awareness and drive research toward better patient care.

Unfortunately, Church’s long journey to diagnosis and the minimization of her Sjögren’s symptoms is common. This is beginning to change because of increased awareness and emerging treatment options, but this autoimmune disease is still underdiagnosed.

What is Sjögren's disease?

“Sjögren’s disease is one of the most common systemic autoimmune diseases,” says Donald Thomas, M.D., a rheumatologist at Arthritis and Pain Associates in Prince George’s County, Maryland, and a clinical professor of medicine at that state’s Uniformed Services University. Up to 4 million people in the United States have Sjögren’s, more than the estimated 1. million people with rheumatoid arthritis and the estimated 1.5 million with lupus, two other common autoimmune diseases.

Who was Henrik Sjögren?

Henrik Sjögren was a Swedish ophthalmologist who lived from 1899 to 1986 and was one of the first to recognize Sjögren’s symptoms. He coined the term Sjögren’s syndrome, which has since been changed to Sjögren’s disease. The condition was previously called sicca complex syndrome or Mikulicz’s disease.

“With Sjögren’s, the immune system especially likes to attack the glands of the body,” Thomas says, especially the salivary and tear glands. When Sjögren’s attacks these glands, it stops their ability to produce fluid, resulting in the disease’s two most recognized symptoms, dry mouth and dry eyes.

“Sjögren’s is not limited to the salivary and tear glands. In some patients, it may involve other organs,” says Nezam Altorok, M.D., a board-certified rheumatologist and a professor at the University of Toledo’s College of Medicine and Life Sciences. He says additional symptoms can include aching joints, fatigue and inflammation of blood vessels in the skin, a condition known as vasculitis. The disease also increases the risk of lymphoma, a cancer of the lymphatic system.

Key symptoms of Sjögren’s

Though Sjögren’s can affect any glands in the body, Thomas says, dry eyes and dry mouth are the most common symptoms. “Sjögren’s can do the same thing with the glands of the skin, so they may have dry, itchy skin,” he explains. “It can affect the vaginal walls, so they can have dry vaginal areas. But also, Sjögren’s can attack almost any organ of the body.”

In fact, up to half of those with Sjögren’s develop symptoms outside the glands, often in the joints, gastrointestinal tract, nervous system, kidneys and/or lungs. Common extra-glandular symptoms include:

Extreme fatigue
Numbness in hands or feet
Muscle pain
Joint pain
Gastrointestinal issues
Skin rashes
Dry, persistent cough
Dysautonomia, such as dizziness, heart palpitations and postural orthostatic tachycardia syndrome
Headaches and migraines

In addition, the lack of saliva can lead to dental complications.

What causes Sjögren’s disease?

The exact cause of Sjögren’s is not known, but many researchers believe both genetic and environmental factors are involved. “You need to be born with the genes that actually cause the disease,” Thomas says, “and then something has to trigger those genes to cause the immune system to become overactive.”

Women are at much higher risk of developing Sjögren’s than men — 90 percent of those with the disease are women. Researchers are unsure why this is.

While you can get Sjögren’s at any age, it’s more common in people over 40. “When we age, there's more inflammation in our system, and that can cause autoimmune diseases, including Sjögren’s,” Altorok says.

How is Sjögren’s diagnosed?

Sjögren’s is notoriously difficult to diagnose.

“There’s more under- or undiagnosed patients with Sjögren’s than those with an established diagnosis,” Altorok says, adding that people often ignore symptoms that may seem common and minor, like dry mouth and eyes. These symptoms can quickly develop into more serious complications if left untreated, so it’s important to discuss any symptoms at regular health checkups, no matter how minor they may appear.

Another reason for underdiagnosis is that Sjögren’s usually evolves over several years, while other autoimmune conditions, such as rheumatoid arthritis, can develop over months or even weeks.

“It’s a very slowly evolving disease over time, so people can start to get symptoms way before they’re ever diagnosed,” Thomas says. “Patients tell me about symptoms that they were having even when they were a teenager.”

“For diagnosis of Sjögren’s, we typically look for symptoms like dry eyes, dry mouth, but also there are blood tests that are very helpful,” Altorok says. The blood tests a rheumatologist may order help identify antibodies typically present in individuals with Sjögren’s. Sometimes the doctor will also order a salivary gland test to assess saliva production or an eye test to determine if tear production is reduced.

Dry eyes and dry mouth aren’t always the first symptoms.

“Sjogren’s symptoms do not always begin with dryness, as in my case. The disease is difficult to diagnose,” Church says. She adds that many people are diagnosed later in life, when the disease has progressed to a level of pain or discomfort when seeking a diagnosis and treatment becomes a priority.

How can Sjögren’s be treated?

Once a diagnosis is made, the rheumatologist creates a treatment plan, often in collaboration with other specialists. Currently, treatment addresses the symptoms, not the disease itself. There are no Food and Drug Administration–approved drugs to calm down this systemic inflammation and keep it from attacking the body, although a few drugs are in clinical trials and could be approved soon by the FDA, Thomas says. The FDA recently granted a new drug nipocalimab with a breakthrough therapy designation, which expedites the review process, and the drug is entering its third phase of clinical trials.

Options to treat symptoms include eye drops or ointments to soothe dry eyes, prescription medications to increase saliva production and medicines to help with specific symptoms of Sjögren’s, such as joint pain or inflammation.

“We tailor the treatment based on what manifestations of Sjögren’s a patient has,” Altorok says. “It ranges from conservative options when there’s minimal symptoms to more intensive treatment options when the manifestations are more serious.”

Those with Sjögren’s also need a more robust dental routine. “Unfortunately, just brushing and flossing won’t do it,” says Athena Papas, a professor at Tufts University’s School of Dental Medicine who specializes in Sjögren’s.

“I can’t think of another disease that requires so many specialists to care for them. I have nine doctors for my Sjögren’s,” Church says.

Living with Sjögren’s

“Hope is really right around the corner,” says Church, referring to the drugs in clinical trials. “Now that research has shown that the disease is systemic and serious, and can affect anyone at any age, more people will be correctly diagnosed, and this also brings hope.”

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Angela Myers is a contributing writer who covers health and medical technology. Her work has appeared in Forbes and Healthline, among other publications.