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Sarah Schafer MD MPH Profile picture
Sarah Schafer MD MPH
@SarahSchaferMD
Medical educator, Sjogren’s & spondylitis patient. I combat Sjogren's myths to improve diagnosis and care for this serious, systemic disease. No medical advice.
Sep 21, 2022 • 20 tweets • 8 min read
#Sjogren’s is not rare. It is about as common as RA, but mostly undiagnosed. Prevalence estimates vary widely, from .1% to 3 %. Low estimates are derived from registries that do not account for underdiagnosis, under-reporting, and Sjogren’s w/ another AIRD. 1/18 About 1% of the US population has #Sjogren’s. It is a neglected disease, despite undeniable evidence that it is a serious, systemic disease. The “rare, nuisance sicca disease” paradigm remains deeply entrenched, even among some rheumatologists. 2/
Jul 23, 2022 • 16 tweets • 4 min read
#Sjogren’s patients often have difficulty finding the care they need, especially when it comes to systemic manifestations. Many are told that they have the “glandular version”, despite undeniable evidence that Sjogren’s is a serious, systemic disease.
1/ There is no “glandular version” of Sjogren’s. You can find systemic features in almost every patient- if you look for them.
“The evaluation of the systemic manifestations of SS are not properly incorporated into clinical practice”.
2/
 pubmed.ncbi.nlm.nih.gov/35650656/
Jun 30, 2022 • 8 tweets • 3 min read
"What’s more devastating is that the next three struggles the researchers identified—constructing an explanation for suffering, negotiating with the health care system, and proving legitimacy—are all toxic side effects of modern medicine" 1/ Sjogren's patients are often treated as if their symptoms could not be that bad; many physical symptoms are psychologized, especially autonomic and other neuropathies which are labeled as anxiety or FND. Patients often feel abandoned or gaslit. #dysautonomia
2/
Jun 15, 2022 • 18 tweets • 3 min read
It can take years, even decades, to get a Sjogren’s diagnosis. Some rheumatologists insist on positive antibody tests. Many do not understand the limitations of diagnostic tests, including SSA and the minor salivary gland biopsy (MSGB).
1/18 The MSGB is one of the tests in the Classification Criteria (CC). Rheumatologists may confuse CC with diagnostic criteria and insist that CC be met for a Sjogren’s diagnosis. Many w/ Sjogren’s do not fulfill the CC, especially early on. There are no diagnostic criteria.
2/