Sjögren’s (pronounced show-grins) disease is an autoimmune condition that affects the moisture-making glands in the body. The disease can affect the eyes, mouth, nasal passages — even the vagina — and cause extreme dryness and chronic pain among other life-altering symptoms.
Unfortunately, it can take years to get a diagnosis for Sjögren’s in part because symptoms like dryness can be dismissed by healthcare providers as eye allergies or menopause or just no big deal. But Sjögren’s is a serious, systemic disease.
Recently, the international Sjögren's community officially changed the name from “Sjögren's syndrome” to “Sjögren's disease” to more accurately reflect how complex and serious the condition is. And the term “secondary Sjögren’s” is no longer used because it implied that Sjögren’s was less important when diagnosed along with other autoimmune diseases.
Read: Autoimmune Diseases 101 >>
The shift in language is a step in the right direction in raising awareness about the disease. Today, about 4 million people in the U.S. are living with Sjögren's and most of them are women or people assigned female at birth (AFAB).
Here’s more on what you need to know about Sjögren’s disease symptoms, risk factors and treatments.
What is Sjögren's disease?
Sjögren’s is an autoimmune disease that occurs when the body’s immune system mistakenly attacks glands that make moisture in the mouth, eyes and other parts of the body. The limited production of fluid leads to dryness and irritation, among other symptoms.
Sjögren’s can also cause damage to the lungs, kidneys and nervous system. And people with Sjögren’s may be diagnosed with additional autoimmune diseases, such as rheumatoid arthritis and lupus.
What are the symptoms of Sjögren's disease?
The most common symptoms of Sjögren's are dry eyes and dry mouth. Your eyes may feel grainy — like there’s sand in them — and you may experience blurry vision, sensitivity to light and itchy eyelids.
Dry mouth can cause problems with swallowing, tasting and speaking, and the lack of saliva can lead to dental problems, such as cavities and mouth infections.
In addition to dry eyes and dry mouth, the disease can also affect other tissues and organs and show up in different ways.
Other symptoms can include:
- Dry skin
- Dry nasal passages
- Swelling in the glands in the face and neck
- Fatigue
- Joint pain
- Muscle aches and weakness
- Memory problems
- Numbness and tingling in arms and legs
- Shortness of breath
- Skin rash
What are the risk factors for Sjögren's disease?
The exact cause of Sjögren’s disease is unknown, but researchers think a combination of environmental factors, genes and illness play a part.
You may have an increased risk for Sjögren's if you:
- Are a woman or person AFAB
- Are over the age of 40
- Are in perimenopause or menopause
- Have/had certain viral or bacterial infections that may trigger Sjögren’s
- Have an immediate family history of autoimmune diseases
How is Sjögren’s disease diagnosed?
There’s no one test that can diagnose Sjögren’s disease. And a diagnosis can be complicated by the fact that multiple healthcare providers are usually involved in the diagnosis, including rheumatologists, dentists and ophthalmologists.
Typically, a physical exam starts the process followed by blood tests and tests to check tear and saliva levels. These tests can include:
- Blood tests for antibodies SS-A and SS-B
- Schirmer test for tear production
- Rose bengal and lissamine green dye tests for signs of dry eye
- Saliva test
- Salivary gland biopsy
Women and Sjögren’s disease
Nine out of 10 people with Sjögren’s disease are women and people AFAB. Research is ongoing as to why more women are affected than men, but some research suggests that estrogen — or the lack of estrogen — may contribute to the disease since most women are diagnosed around the time of perimenopause and menopause when estrogen levels go down.
Due to the lack of moisture in the body, women living with Sjögren’s can also experience more extreme vaginal dryness and genitourinary syndrome of menopause (GSM), as well as other gynecological problems, than women without Sjögren’s.
What are the treatment options for Sjögren's disease?
Treatment plans for Sjögren's vary from person to person and no two treatment plans are the same. This is why it’s important to be involved in making decisions regarding your treatment options.
Read: How Shared Decision-Making Can Lead to Better Healthcare >>
Most people with Sjögren’s use a combination of over-the-counter products and prescription drugs.
Treatment options can include:
- Corticosteroids
- Disease-modifying anti-rheumatic drugs (DMARDs)
- Biologics and small molecule therapies
- Prescription dry eye drops and inserts
- Prescription oral medications for dry mouth
Lifestyle factors such as good dental hygiene and staying hydrated throughout the day may help with symptoms for some people.
There’s no cure for Sjögren’s, but an individualized treatment plan can help manage symptoms and reduce the risk for complications. As always, talk to your healthcare provider right away if you have symptoms or think you may be living with Sjögren's disease. The average diagnosis takes three years — there’s no time to waste.
This educational resource was created with support from Amgen, a HealthyWomen Corporate Advisory Council member.
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