Carrie Ann Inaba, the longtime judge on Dancing with the Stars, has spent the past several months speaking publicly about a disease she managed largely in silence for over a decade. She was first diagnosed with Sjögren disease in 2013 — but her symptoms began decades earlier, and multiple physicians dismissed or missed them before a rheumatologist ordered the right blood tests and a specialized dry-eye examination.
Her experience is not unusual. It is the norm.
An estimated 4 million Americans are living with Sjögren disease, according to the Sjögren's Foundation. Approximately 90% are women. And the average time from first symptom to confirmed diagnosis exceeds four years — because the most common early signs of the disease (dry eyes, dry mouth, fatigue) overlap with dozens of other conditions, and because Sjögren disease has historically been underrecognized even by clinicians who see it regularly.
Healthline published a feature on Inaba's journey on approximately July 3, 2026, generating renewed public interest in a condition that affects far more Americans than most people realize.
Why This Matters
Sjögren disease is classified as a systemic autoimmune disease — meaning the immune system attacks the body's own tissues in a way that extends far beyond the glands most people associate with the condition. The name refers to the most visible consequence: the body's moisture-producing glands stop functioning properly, causing severe dryness of the eyes and mouth. But that is only the beginning.
For many patients, Sjögren disease also causes profound fatigue, joint and muscle pain, cognitive difficulties ("brain fog"), nerve-related symptoms including tingling and numbness, and in severe cases, inflammation of the lungs, kidneys, liver, nervous system, and blood vessels. Untreated or uncontrolled Sjögren disease can cause permanent corneal damage from chronic dry eyes and organ damage from systemic inflammation.
There is currently no FDA-approved disease-modifying treatment for Sjögren disease — though several promising candidates are in clinical trials. That means patients today are managing symptoms rather than treating the underlying disease process.
And yet millions of people do not know they have it.
What We Know So Far: The Disease
Sjögren disease (pronounced SHOW-grins) is named for Swedish ophthalmologist Henrik Sjögren, who described the condition in 1933. In recent years, the preferred spelling has shifted from "Sjögren's" to "Sjögren disease" — removing the possessive to align with modern disease-naming conventions.
The immune system in Sjögren disease primarily attacks the exocrine glands — the glands that produce moisture, including the lacrimal glands (which produce tears) and salivary glands (which produce saliva). This produces the condition's hallmark symptoms of dry eyes and dry mouth. But the autoimmune process does not stop there.
The Sjögren's Foundation documents nearly 50 distinct symptoms reported by patients in a single year — far more than most providers expect. Dr. Nina Couette, a rheumatologist and assistant professor at The Ohio State University Wexner Medical Center, explained to Healthline that the disease's breadth is what makes it so difficult to recognize:
"Sjogren's is a complex systemic autoimmune disease that can affect multiple organs and body systems. In addition to dryness, patients may experience profound fatigue, brain fog, joint and muscle pain, nerve-related symptoms, and involvement of organs such as the lungs, kidneys, or nervous system."
Sjögren disease is divided into two categories:
- Primary Sjögren disease : Occurs alone, without another diagnosed autoimmune condition
- Secondary Sjögren disease : Occurs alongside another autoimmune condition, most commonly rheumatoid arthritis or lupus
The condition frequently co-occurs with other autoimmune diagnoses. Inaba herself has also been diagnosed with fibromyalgia, rheumatoid arthritis, and lupus — a cluster that is common in Sjögren disease patients and further complicates the diagnostic picture.
The Diagnostic Delay: Why It Takes So Long
Inaba's diagnostic journey lasted more than a decade after her first symptoms appeared. She brought up the possibility of Sjögren disease to an ophthalmologist, who dismissed it. It was only when she developed severe, systemic symptoms and saw a rheumatologist who ran targeted blood tests and a dry-eye examination that the diagnosis was confirmed.
Dr. Couette explained the structural reason for these delays to Healthline: "The main reason for this is that the hallmark symptoms, including persistent dry eyes and dry mouth, are common and can result from many different causes, including menopause, medication side effects, fibromyalgia, and other autoimmune diseases such as rheumatoid arthritis or lupus. Because these symptoms overlap with so many other conditions, identifying Sjogren disease often requires careful evaluation and specialized testing."
Common misattributions of Sjögren disease symptoms include:
- Dry eyes attributed to contact lens use, aging, or environmental factors
- Dry mouth attributed to anxiety, medication side effects, or dehydration
- Fatigue attributed to stress, poor sleep, or depression
- Joint pain attributed to aging, overuse, or fibromyalgia
- Brain fog attributed to stress, sleep deprivation, or perimenopause
Each individual symptom has a common, non-alarming explanation. It is the pattern — the combination, the persistence, and the systemic nature — that points toward Sjögren disease. And recognizing that pattern often requires a rheumatologist or a clinician who specifically thinks to test for it.
The Diagnostic Tests
Sjögren disease is typically diagnosed through a combination of:
Blood tests:
- Anti-SSA/Ro antibodies — positive in approximately 70% of primary Sjögren disease patients; a key diagnostic marker
- Anti-SSB/La antibodies — less sensitive but more specific to Sjögren disease
- ANA (antinuclear antibody) — often elevated, though not specific to Sjögren
- Complete blood count, inflammatory markers (ESR, CRP), and kidney and liver function tests
Ocular tests:
- Schirmer's test — measures tear production by placing a small strip of paper under the eyelid
- Slit-lamp examination with vital dye staining — assesses corneal and conjunctival damage from dry eyes
Salivary gland evaluation:
- Salivary flow rate measurement
- Parotid gland ultrasound
- Lip biopsy (minor salivary gland biopsy) — the most definitive diagnostic test, showing characteristic lymphocytic infiltration of salivary gland tissue
Most of these tests are not ordered in a routine primary care visit. A referral to a rheumatologist — and coordination with an ophthalmologist experienced in dry-eye conditions — is typically the most reliable path to diagnosis for patients with a suggestive symptom pattern.
Where the Diagnostic Gap Is Largest
The populations most likely to go undiagnosed or to experience multi-year delays include:
- Women in their 40s and 50s whose symptoms are attributed to perimenopause or menopause
- Patients in primary care settings where the combination of dry eyes, fatigue, and joint pain is managed symptomatically without investigation for an underlying autoimmune cause
- Patients from racial and ethnic minority groups who face broader disparities in autoimmune disease diagnosis and specialist access
- Patients in rural areas with limited access to rheumatologists
- Younger women (20s–30s) in whom the disease is less commonly suspected
- Men, in whom Sjögren disease is rarer (approximately 10% of cases) but often diagnosed even later due to lower clinical suspicion
What Doctors and Experts Say
Dr. Couette told Healthline that the current research environment for Sjögren disease is the most promising in decades: "Several investigational therapies, including ianalumab and nipocalimab, are being studied in clinical trials and have shown promising results. While these treatments are still under review, they offer hope for future disease-modifying therapies that may address the underlying autoimmune process rather than just symptoms."
Ianalumab (Novartis) and nipocalimab (J&J/Janssen) are among the most advanced investigational agents for primary Sjögren disease. Both are biologic therapies targeting specific components of the abnormal immune response. Neither is yet FDA-approved for Sjögren disease.
Inaba, speaking to Healthline and other outlets as part of her advocacy through Novartis' SJÖUT for Sjögren's campaign, has been clear about the disease's emotional and social toll: "Something that people don't often talk about with Sjögren disease is the depression that comes along with it, and anxiety. The uncertainty of 'When is a flare-up going to happen?' The uncertainty of, 'Do I have energy to get through the day today?'"
She told People magazine: "I live with constant pain, constant dryness in my eyes and in my mouth, constant fatigue. It's invisible, you can't see it, but it's always with me."
Symptoms and Warning Signs to Watch For
The following symptom combination — particularly when persistent over months and when multiple symptoms occur together — warrants evaluation for Sjögren disease:
Signature symptoms:
- Severe, persistent dry eyes — often described as a gritty or burning sensation that does not resolve with over-the-counter drops
- Persistent dry mouth — difficulty swallowing dry foods, need to drink water to swallow, frequent dental cavities despite good hygiene
- Profound, unexplained fatigue — not relieved by sleep; disproportionate to activity level
Systemic symptoms that may accompany:
- Joint pain and morning stiffness, often affecting multiple joints
- Cognitive difficulties — brain fog, difficulty with word retrieval or concentration
- Swollen salivary glands (parotid glands — noticeable as swelling at the jaw/ear)
- Dry skin, dry nasal passages, or dryness affecting other mucous membranes
- Peripheral neuropathy — tingling, numbness, or burning sensations in hands or feet
- Skin rashes, particularly light-sensitive rashes
- Recurring respiratory symptoms — dry cough or shortness of breath in some patients
- Raynaud's phenomenon — fingers turning white or blue in cold or stress
If you have experienced multiple of these symptoms over months rather than days, particularly dry eyes, dry mouth, and fatigue together, mention Sjögren disease specifically to your healthcare provider and ask for a referral to a rheumatologist.
What You Can Do Now
- Track your symptoms. Keep a written log of dry eye severity, dry mouth frequency, fatigue patterns, and joint pain. A symptom log over 4–6 weeks is valuable clinical information for a rheumatologist.
- Ask your primary care provider for a referral to a rheumatologist if you have had persistent dry eyes, dry mouth, and fatigue — particularly if these have lasted months and have not responded to simple remedies.
- Request specific blood tests at your next visit: Ask about anti-SSA/Ro and anti-SSB/La antibody testing if you have a clinically suggestive symptom pattern.
- See an ophthalmologist who specializes in dry eye disease if you have persistent, severe eye dryness. Request evaluation for Sjögren disease specifically.
- Do not dismiss "dryness" as trivial. Patients with Sjögren disease often report being told their dry eyes or dry mouth were not significant. If these symptoms are affecting your quality of life, they deserve clinical attention.
- Access the Sjögren's Foundation at sjogrens.org for patient resources, physician finders, and information about clinical trials.
- If you are already diagnosed , ask your rheumatologist whether you are eligible to participate in the ianalumab or nipocalimab clinical trials — both are actively enrolling in multiple U.S. cities.
Cost and Access: What Patients Should Know
There is currently no FDA-approved disease-modifying treatment for primary Sjögren disease. Management consists of symptom control:
- Artificial tears (over-the-counter) and prescription eye drops for dry eyes — including Restasis (cyclosporine) and Xiidra (lifitegrast), which are covered by most insurance plans with prior authorization
- Prescription pilocarpine or cevimeline to stimulate saliva production
- NSAIDs, hydroxychloroquine (Plaquenil), or immunosuppressants for joint pain and systemic inflammation
- Dental care to manage accelerated cavity risk from dry mouth — often not covered by standard dental plans at sufficient levels
Patients without insurance can seek rheumatology care at academic medical center outpatient clinics, where sliding-scale fees are sometimes available. The Sjögren's Foundation maintains a physician directory and patient support resources. GoodRx can significantly reduce out-of-pocket costs for medications, including hydroxychloroquine and artificial tear prescription options.
What Happens Next
Clinical trials for ianalumab and nipocalimab are among the most watched in rheumatology. If either or both receive FDA approval for Sjögren disease — which would be a first — it would transform a disease currently managed only symptomatically into one with a disease-modifying option. Dr. Couette described the current research environment as "especially exciting."
The Sjögren's Foundation continues to push for Sjögren disease to receive the same clinical screening attention as lupus, rheumatoid arthritis, and other autoimmune conditions — including advocacy for anti-SSA/Ro screening as part of standard workups for women presenting with persistent fatigue and musculoskeletal symptoms.
MedicalDaily will follow FDA action on Sjögren disease therapeutics and report on any clinical trial approvals or guideline updates.
The Bottom Line
Sjögren disease affects 4 million Americans — almost all of them women — and takes an average of more than four years to diagnose after symptoms first appear. The disease is real, common, and often invisible. It is not just dry eyes and dry mouth: it can affect nearly every organ system and cause profound fatigue, joint pain, and neurological symptoms that are frequently attributed to stress, aging, or other conditions.
If you have persistent dry eyes, dry mouth, and unexplained fatigue — together, over months — mention Sjögren disease specifically to your provider and ask for a rheumatology referral. The path to diagnosis may still require persistence. But knowing the name, knowing the tests, and knowing to ask are the first steps.
