Promoting optimal care for Sjogren's, a common, serious, systemic disease.
PATIENT STORIES & ADVOCACY
Key Concepts
This page contains first-hand accounts of what's it's like to live with Sjogren's. Learn what people with Sjogren's have done to raise community awareness.
These stories help validate your experience, advocate for yourself, and may inspire you to spread the word about Sjogen's.
Articles
I Have Sjogren's - Dr. Rebecca (Bexi) Lobo's account of how she discovered she had Sjogren's, what it is, and what it's like to live with it.
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Dis oughta know me, uhhh?!? - Dr. Rebecca (Bexi) Lobo's account of how she discovered she had dysautonomia, what it's like to live with it, and what dysautonomia is. Dysautonomia is an often overlooked cause of fatigue, lightheadedness, "brain fog" and gastrointestinal symptoms in Sjogren's.
MS-ing the Mark - KP Kelly shows how neurological Sjogren's symptoms were repeatedly mistaken for multiple sclerosis (MS) and how this delayed her Sjogren's diagnosis.
Getting a diagnosis during COVID article and audio story by Therese Pope, Sjogren's patient
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She's Not a Princess, She Has Sjogren's- blog post by Dr. Susan Masterson, Sjogren's patient and creator of the Autoimmune Self-Care blog.
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One side effect of being young, female and sick: People won’t believe you
How to talk to your family about Sjogren's (2014) by Dr. Sarah Schafer, Sjogren's patient
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Speak Out Rheum: Under The Radar (2013) by Dr. Sarah Schafer, Sjogren's patient.
Please note: This article is old and quotes an unrealistically low number for the prevalence of systemic manifestations. The evidence is undeniable: Sjogren's is always systemic, never limited to sicca.
Videos
I Have Sjogren's - Dr. Rebecca (Bexi) Lobo's interview with a CBS TV reporter of how she discovered she had Sjogren's, what it is, and what it's like to live with it.
Updated 02-24-2024