As a Sjogren’s patient and a physician, I have the unique ability to bridge both worlds. I know what it is like to have my life upended by this disease. As a doctor, I sympathize with the challenge of caring for patients with complex medical needs.
I watch many patients in the online community struggle like I did to get a timely diagnosis and up-to-date treatment. This has fueled my passion for improving Sjogren’s education and awareness. I have been doing this through teaching, writing, and advocacy. In order to reach more patients and clinicians, I created this website and blog.
What do I do when I’m not writing, resting or managing my health?
I swim outdoors every afternoon, rain or shine, thanks to the mild Bay Area weather. Even when I’m feeling quite ill, swimming reliably improves my energy and pain levels. I enjoy light gardening, cooking and reading fiction. Friends and family are central in my life. My two young adult sons live on the West Coast; I always enjoy their visits.
A full career and family life
In 1985, after graduating from UC Davis School of Medicine and UC Berkeley School of Public Health, I embarked on a busy medical career. I gave birth to two delightful, healthy sons in 1989 and 1992. I managed to raise two young children, work full-time, and navigate major family health crises despite not feeling well myself. I now understand that the flu-like fatigue I experienced back then was due to undiagnosed Sjogren’s. Still, I was able to override my symptoms and function at a high level just as long as I slept well, exercised daily and ate a good diet. This worked, until it didn’t.
My Sjogren’s story
Following minor surgery in 2002, flu-like fatigue, GI symptoms and pain hijacked my life. This was not the flu. Weeks, then months, went by with no improvement. Mostly bedridden, I was unable to work or even drive my children to school.
After my internist ruled out obvious infections, she referred me to a number of specialists. If these doctors had been familiar with Sjogren’s, they might have noticed my nearly textbook presentation. A history of longstanding dry eye disease (including punctal cautery), intractable sinus infections, GERD and gastritis, together with my presenting complaints, should have raised the possibility of Sjogren's. But the specialists kept telling me there was nothing seriously wrong. Like most Sjogren’s patients, I looked well. My doctors simply could not grasp how sick I really was.
Desperate for a diagnosis, I began to read the medical literature on my laptop in bed. When I realized that my symptoms looked a lot like Sjogren’s, I asked to see a rheumatologist. At first he did not agree with my assessment because my tests were normal. After vigorous self-advocacy based on my research about the limitations of diagnostic tests, we agreed to start treatment. Seven years later, a second “lip biopsy, " along with progressive dryness measurements, confirmed that I definitely had Sjogren’s. I am certain that being an assertive, knowledgeable patient has been key to getting good care over the years.
I hope that patients will use this website to feel more confident advocating for themselves. I hope that clinicians will find the information to be inspiring and valuable.
Sarah Schafer, MD and Sjogren's patient
Sarah Schafer: Academic background and Sjogren’s-related work
BA- Biochemistry, UC Berkeley 1979
MD- UC Davis 1985
MPH- UC Berkeley 1985
ResidencyTraining: Pediatric internship, Kaiser Oakland 1985-86, General Preventive Medicine, State of California, and Contra Costa County Health Services 1986-87
Board Certification, Public Health and General Preventive Medicine, 1989
Medical Practice: 1987-2002, Public health physician. Child health, Family Planning and STD programs, Contra Costa County and City and County of San Francisco
Consensus Expert Panel Member for Phase 1 Clinical Practice Guidelines, Rheumatology/Systemic. Published 2016
Moisture Seekers (SSF), multiple articles published
“Speak Out Rheum: Under the Radar”. The Rheumatologist, Nov. 2013. http://www.the-rheumatologist.org/article/speak-out-rheum-under-the-radar/
Presentations to multiple groups of SF Bay Area clinicians- “Sjogren’s: More than Dry”
Sjogren’s Syndrome Foundation National Patient Volunteer Award, 2016 -for educating primary care providers about Sjogren’s
I want to thank my internist for her steadfast support over the years. She believed me, and went to bat for me countless times. I am also deeply indebted to my two wonderful rheumatologists. I am grateful to each of you for your excellent care.
The amazing leadership and tireless work of the Sjogren’s Syndrome Foundation has improved the lives of so many of us. I feel fortunate to have this resource!
A special thanks to Shelby Wilson, Melissa Strader and my secret "tech guru" for their assistance with this website.