Affecting as many as 4 million people nationwide, Sjogren’s is a chronic autoimmune disorder in which a person’s own white blood cells misfire, ravaging their moisture-producing glands instead of unhealthy germ invaders. Applying the national incidence rate to Rochester, there could be hundreds, perhaps even a couple thousand local residents living with Sjogren’s.
And while the hallmark symptoms, at first blush, may seem bothersome but benign, Sjogren’s can wreak serious long-term damage. According to Andreea Coca, M.D. – the URMC rheumatologist overseeing the new clinic – the disease can rot teeth for lack of saliva’s consistently “washing” them. It also can make it both tiring and uncomfortable to talk or swallow, and without tears to coat eyes in a protective sheath, it can bring about eye ulcers and the resultant scars. As many as 1 in 3 patients’ disease also impacts their central and peripheral nervous systems, in some cases causing vexing numbness, tingling and pain (neuropathies). Plus, for the 90 percent of sufferers who are women, the disease may trigger vaginal discomfort and dryness.
“For about ten percent of sufferers, Sjogren’s can be even more problematic,” Coca said. “For that subset, it’s a more systemic disease, endangering important organs like the kidneys, lungs, heart, not to mention frequently causing arthritis. It also puts those patients at a 44-fold greater risk for lymphoma – a blood cancer that arises when ‘good’ white blood cells behave abnormally, reproducing too quickly or living too long.”
Historically, Sjogren’s patients have been accommodated in general rheumatology clinics; they’ve also sought advice from primary care doctors or symptom-specific specialists, like neurologists, ophthalmologists and dentists. But now, by pulling together a cohort of these patients in Rochester, Coca says they stand to benefit from more specialized care and coordinated access to the many disciplines that need be involved in caring for these patients.
“If we’re aware that a patient has an established diagnosis of Sjogren’s, for instance, we can monitor them annually for lymphoma,” she explained.
The research opportunities abound, she added. “To our knowledge, there aren’t any local clinics dedicated to Sjogren’s. And to date, there aren’t that many viable therapies.”
Pooling these patients together, she said, could help URMC reach the ‘critical mass’ needed to bring more investigative clinical treatments to Rochester.
Presently, some Sjogren’s research is already underway at URMC. Ignacio Sanz, M.D., chief of Allergy, Immunology and Rheumatology, has received grant funding to investigate why the immune system goes awry in this disease. Sanz also serves as Director of URMC’s Autoimmunity Center of Excellence – one of only 8 such federally funded (National Institutes of Health) centers nationwide – which aim to coordinate innovative clinical trials in multiple autoimmune diseases, including Sjogren’s. Coca says that, with a more robust Sjogren’s clinic, more research and more insights into future treatments are possible.
The clinic would look to follow up with patients three to four times a year. To be considered, patients would need either an established diagnosis of Sjogren’s, or sicca symptoms, which include dry eyes and dry mouth.
To learn more about this new clinic or to book an appointment with a URMC rheumatologist, call 341-7900.
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