Eyeworld

52 | EYEWORLD | FALL 2025 C ORNEA BEYOND THE ROUTINE by Liz Hillman Editorial Co-Director About the sources Esen Akpek, MD Bendann Family Professor of Ophthalmology Wilmer Eye Institute Johns Hopkins University School of Medicine Baltimore, Maryland Vatinee Y. Bunya, MD, MSCE Harold G. Scheie Chair and Associate Professor of Ophthalmology Scheie Eye Institute University of Pennsylvania Philadelphia, Pennsylvania Janet Church President and Chief Executive Officer Sjögren's Foundation Reston, Virginia D ry eye is not fun for anyone, but Sjögren's dry eye is serious. This is the message Janet Church, President and CEO of the Sjögren's Foundation and a patient with Sjögren's herself, wants to get across to doctors, patients, and the healthcare population at large. "You have to do something about it and not think of it as 'just dry eye.' It's dry eye and inflammation that is going to progress if you don't stay on top of it," she said. "Doctors, if they see dry eye, should be doing a test to see if the patient has Sjögren's." The diagnosis journey Research suggests that it takes at least 3 years to arrive at a Sjögren's disease diagnosis from the patient initially presenting with symptoms. 1 However, Esen Akpek, MD, said it can take up to 10 years to diagnose a patient with Sjögren's. "It's underestimated and underappreciat- ed," Dr. Akpek said. "Also, serology, which is the main diagnostic method, is a false nega- tive about 60% of the time in ophthalmology literature. If you look at the rheumatology literature, it's about 40% of the time. We can safely say that half of the time, serology is a false negative." The clinical manifestations of the disease are so diverse that it often takes a multidisci- plinary team of physicians to figure out that Sjögren's is the root cause of the patient's vari- ous symptoms. Ms. Church said her road to a Sjögren's diagnosis did not start in an ophthalmologist's office. She noticed she was getting thirstier (she later learned that a human can't discern their mouth is dry until 50% of their salivary function is already gone). Reflecting back after her diag- nosis, Ms. Church said she had sinus infections and lymph node and parotid gland swelling throughout her life. She hadn't had any discern- ible eye dryness prior to her diagnosis (though she said she does now) but noted that it's hard to determine dryness as a patient because dry- ness, to an extent, is normal to the patient; it's all they know. "The patient isn't always the one Sjögren's: anything but routine continued on page 54 Severe fluorescein staining of the cornea in a patient with Sjögren's disease Source: Vatinee Y. Bunya, MD, MSCE

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