What Is Sjogren's?
Sjogren’s disease is a systemic autoimmune disease in which the immune system mistakenly attacks the body’s own tissues.
It is best known for dry eyes and dry mouth, but Sjogren’s can affect much more than the glands that produce tears and saliva.
Fatigue, joint and muscle pain, neurological symptoms, lung involvement, gastrointestinal symptoms, skin changes, and dental complications are among the many ways the disease may affect the body.
No two people with Sjogren’s disease will necessarily experience it the same way.
How Do You Say Sjogren's?
If you’ve wondered how to pronounce Sjogren’s, you’re not alone.
The disease is named after Swedish ophthalmologist Henrik Sjögren, so pronunciation varies by language and accent.
In the United States, you’ll commonly hear SHOW-grins. The original Swedish pronunciation sounds different, which is why you may hear the name pronounced more than one way.
Who Gets Sjogren's?
Sjogren’s disease can affect people of almost any age, but it disproportionately affects women and is commonly diagnosed during middle age.
Men and children can develop Sjogren’s too.
Researchers continue to study why women are affected so disproportionately and the possible roles of genetics, hormones, the immune system, and environmental factors.
There is no single “typical” Sjogren’s patient.
Sjogren's & Family History
Sjogren’s is not inherited in a simple, predictable way.
However, genetics appear to contribute to susceptibility, and autoimmune diseases can sometimes cluster within families.
Having a family member with Sjogren’s or another autoimmune disease does not mean you will develop Sjogren’s.
Sjogren's & Hormones
Sjogren’s is frequently diagnosed in women during the same decades when perimenopause and menopause may also be occurring.
That overlap can make symptoms harder to sort out because fatigue, sleep changes, brain fog, discomfort, and dryness can have multiple possible explanations.
Hormonal changes should not automatically be assumed to explain every symptom.
Sjogren's History
Sjogren’s disease is named after Swedish ophthalmologist Henrik Sjögren, who published his doctoral thesis in 1933 describing patients with severe dry eyes, several of whom also had arthritis.
For decades, the condition was commonly called Sjogren’s syndrome.
As scientific understanding evolved, its systemic nature became increasingly recognized. An international consensus formally supported changing the terminology to Sjogren’s disease to better reflect its systemic and serious nature.
You may still see “Sjogren’s syndrome” in older research, medical records, and websites.
Today, Sjogren’s disease is the preferred terminology.
Why It's Missed
Sjogren’s doesn’t always announce itself with one obvious set of symptoms.
Symptoms may develop gradually, appear at different times, affect seemingly unrelated parts of the body, or overlap with other medical conditions.
Someone might see an eye doctor for dry eyes, a dentist for dental problems, a neurologist for numbness or tingling, and a primary-care provider for fatigue – without those symptoms immediately being connected.
That’s why looking at the whole clinical picture can matter.
Sjogren's Testing
There is no single test that confirms Sjogren’s disease in every person.
Evaluation may include medical history, symptoms, physical examination, bloodwork, eye testing, salivary testing, salivary-gland evaluation, or minor salivary-gland biopsy, depending on the individual.
Not everyone needs every test.
Negative antibody testing does not automatically rule out Sjogren’s disease.
Seronegative Sjogren's
Seronegative Sjogren’s generally refers to Sjogren’s disease in someone who does not test positive for certain antibodies commonly associated with the disease, particularly anti-SSA/Ro.
When antibody testing is negative, symptoms, medical history, examination findings, and other objective testing can become particularly important.
Bloodwork is one piece of the diagnostic picture – not necessarily the entire answer.
Criteria vs. Diagnosis
This distinction causes a lot of confusion.
The 2016 ACR/EULAR classification criteria were developed primarily to identify well-defined groups of patients for research.
Classification criteria and clinical diagnosis are not the same thing.
A clinician evaluating an individual patient can consider the broader clinical picture, including symptoms, history, examination findings, laboratory results, objective testing, and other possible explanations.
Not meeting research classification criteria does not, by itself, establish that someone cannot have Sjogren’s disease.
Who Treats Sjogren's?
A rheumatologist commonly plays a central role in diagnosing and managing Sjogren’s disease.
Because Sjogren’s is systemic, other healthcare professionals may also be involved depending on how the disease affects you.
That can include professionals in eye care, oral health, neurology, pulmonology, gastroenterology, nephrology, dermatology, and other specialties.
There is no single Sjogren’s care team that everyone needs.
Experience Matters
Not every rheumatologist – or healthcare professional – has the same experience with Sjogren’s disease.
Some see Sjogren’s frequently. Others may have less experience with its complex or systemic manifestations.
This is part of what I refer to as the Sjogren’s education gap.
Healthcare-professional education around Sjogren’s continues to be an important area of focus, particularly as understanding of Sjogren’s as a complex, systemic disease continues to evolve.
That can matter when symptoms extend beyond dry eyes and dry mouth, bloodwork is negative, or someone has a more complex presentation.
If important parts of your clinical picture remain unexplained, seeking another opinion may be reasonable.
This isn’t necessarily about finding a “better” doctor.
It’s about finding the right expertise for your situation.
Research & Awareness
Our understanding of Sjogren’s disease continues to evolve.
Researchers continue to study better ways to recognize and assess the disease, understand its different manifestations, identify biomarkers, and develop potential treatments.
Continued research, education, and awareness matter because Sjogren’s is a complex, systemic disease – not simply a dry-eye and dry-mouth condition.
A Note From Jody
If you’re reading all of this and thinking, “This is a lot,” I understand.
You don’t need to learn everything about Sjogren’s today.
That’s one of the reasons I created Sjogren’s with Jody.
My goal isn’t to tell you what your symptoms mean or what medical decisions you should make. It’s to help you understand Sjogren’s, recognize what may be worth discussing, ask better questions, and feel more prepared for conversations with your healthcare team.
And when one page – or one video – isn’t enough, that’s where Jody’s Waiting Room comes in.
It’s where I put the deeper research, information, resources, and things I learn along the way.
Or, as I like to say, it’s where Jody dumps her brain so she can make room for more.
You don’t have to figure everything out today.
Start with where you are. Then figure out your next step.
DISCLAIMER
For educational purposes only. This information is not medical advice and is not intended to diagnose, treat, or replace individualized care from a qualified healthcare professional. Please discuss your symptoms, testing, diagnosis, medications, and treatment decisions with your healthcare team.