That lady you hate 🐀

An autoimmune disease more common than lupus has zero approved treatments. And 30 to 40 percent of the people who have it show completely normal blood work. Sjogren's disease affects about 1 in 100 people. Roughly 90 percent are women. Most clinicians learned it as a dryness syndrome, dry eyes and dry mouth, an afterthought at the end of the autoimmune lecture. Kara Wada learned it differently. She's an adult and pediatric allergy, immunology, and lifestyle medicine physician, and she became the patient. A dental hygienist at a routine cleaning told her that her mouth tissues looked dry, and years of symptoms snapped into place: dry eye that ended her contact lenses, mascara she couldn't wear without looking like a raccoon, back pain that eased during pregnancy when everyone else's got worse, fatigue like gravity turned up a few notches. She was fortunate. As an immunologist she knew which labs to order, and hers came back blatantly abnormal. For 30 to 40 percent of Sjogren's patients, they don't. What she wants clinicians to know is that dryness will rarely be the chief complaint. Patients come in with body pain that sounds like fibromyalgia. Fatigue from the moment they wake up until they go to bed. Autonomic problems: trouble swallowing, gastric motility issues, constipation, dizziness on standing, heat intolerance. Sjogren's is a common cause of POTS and other forms of dysautonomia. The diagnosis is clinical. Labs support it, but they aren't the end-all. Treatment is where it gets uncomfortable. Hydroxychloroquine, methotrexate, and in severe cases rituximab are all used off label. Nothing is approved for Sjogren's itself. Several drugs are in phase 3 trials now, and Wada is going through screening for one of them. She says there's an undercurrent of hope in the patient community for the first time. The cost is real even when the disease is held in check. After a significant flare, Wada cut her clinic time to half for a while, rebuilt her life around sleep and pacing, and describes her energy like an old iPhone battery: slower to recharge, quicker to drain. She is back up to about three-quarter time and has since had another child. Meanwhile, some rheumatologists still describe it as a nuisance disease, and patients describe being gaslit when their pain and fatigue aren't taken seriously. Her ask of colleagues is small and specific: "Just at least have Sjogren's on your differential. And it doesn't always mean just dry eyes and dry mouth." Listen to the full conversation on The Podcast by KevinMD. Link in the replies. What condition were you taught to treat as minor that your patients experience as anything but? #ThePodcastbyKevinMD