In the 4+ years since my own diagnosis, I have continued to peel back the layers of my illness story, realizing that seemingly unrelated complaints from my teens and twenties were actually early signs and symptoms of what would later be formally labeled as Sjogren’s. It wasn’t until my mid-30s that I finally sought evaluation, diagnosis, and treatment for this systemic progressive autoimmune disease.

Frankly, my $250K education didn’t help much in recognizing the source of my health woes. My fellow patient community taught me so much more about Sjogren’s than what I learned to pass my internal medicine, pediatric, and allergy-immunology board examinations.

A big part of my healing journey involves making the best out of this frustrating disease by writing and speaking out about the myths surrounding this systemic autoimmune condition and educating my peers to think about, look for, and recognize Sjogren’s. As we honor World Sjogrens Day on July 24th, here is what every clinician needs to know about Sjogren’s from the perspective of a physician turned patient.

If you are anything like me, in medical school, you learned how to answer this exam question correctly:

“A postmenopausal woman presents to the clinic complaining of a gritty sensation in her eyes. On physical examination, you note she has poor dentition. Her labs reveal +SSA antibody.

What is the diagnosis?”

Sjogren’s syndrome.

Reality check:

Sjogren’s disproportionately affects women, with 9 out of 10 patients being women. However, the average age of onset is in our 30s and 40s.

Our chief complaint is rarely tissue dryness. More likely, we will come asking for help with profound fatigue, body pain, digestion troubles, or allergy and cough symptoms. Additionally, Sjogren’s is the #1 autoimmune cause of dysautonomia and POTS (postural orthostatic tachycardia syndrome).

Over the last two years, we have ditched the term “syndrome” and the description of primary or secondary disease. Sjogren’s is not just a collection of symptoms but a disease entity.

I bet you also learned about the relationship with the SSA (Ro) and SS-B(La) antibodies—especially if you are a pediatrician, given the implications with congenital heart block—and likely figured if labs are normal, it’s not Sjogren’s.

Reality check:

Between 30 to 40 percent of Sjogren’s patients are seronegative, meaning their labs are normal. Often, classification criteria used for inclusion in research protocols are misconstrued as the end-all-be-all for diagnosis, but the diagnosis of Sjogren’s remains a clinical determination—taking into account the history, examination, and diagnostic study findings.

Recall from the very beginning of our clinical education: We need to treat the patient—not the labs.

Perhaps you also learned that Sjogren’s is a relatively rare disease.

Reality check:

Sjogren’s is estimated to affect 1 in every 100 individuals. Far from rare, this prevalence is similar to celiac and Crohn’s disease. Unfortunately, three out of every four people with Sjogren’s are not yet diagnosed.

I commonly hear from colleagues, “Isn’t Sjogren’s more of a nuisance condition compared to the ‘real’ autoimmune diseases?”

Reality check:

Sjogren’s is known to cause end-organ diseases, including vasculitis, arthritis, interstitial lung disease, renal tubular acidosis, pancreatitis, interstitial cystitis, and autoimmune hepatitis. Small fiber neuropathy and dysautonomia are also very common. Over a 15-20 year period of observation, 8 to 15 percent of Sjogren’s patients develop lymphoma.

To misquote House MD, “It’s not Sjogren’s. It’s never Sjogren’s.” Of course, it isn’t if you never think of it in the first place. Diagnosis is critical to start treatment and screen for end-organ damage and lymphoma. Treatment is important to slow progression and improve the quality of life.

We can’t diagnose what we don’t know about or don’t think about, so please reframe your mental construct of Sjogren’s to more accurately reflect this common systemic autoimmune condition, and then share it with a colleague so they can add Sjogren’s to their differential when the symptoms fit too.

Kara Wada is a board-certified academic adult and pediatric allergy, immunology, and lifestyle medicine physician, Sjogren’s patient, certified life coach, TEDx speaker, and Dr. Midwest 2023. She can be reached at Dr. Kara Wada and on Instagram, YouTube, Facebook, and LinkedIn. She is a national expert, sought-after speaker, advisor, and host of the Becoming Immune Confident Podcast. She is CEO and founder, The Crunchy Allergist and the Demystifying Inflammation Summit, and serves as the director of clinical content for Aila Health.