MY MISSION: TO BE A VOICE
FOR PEOPLE WITH SJOGREN'S
People with Sjogren’s should be able to, but often can’t, rely on their doctors to know how to diagnose and care for this prevalent, serious, and often disease.
Sjogren’s diagnosis and care falls short because of the lack of Sjogren’s medical education and the perpetuation of myths about the disease.
New systemic treatments for Sjogren’s may be approved in the next few years, providing a major incentive for Sjogren’s education and awareness.
This could be a game-changer for Sjogren’s care, but only if rheumatologists and other healthcare professionals are knowledgeable about the systemic manifestations of the disease. Right now, Sjogren’s is widely, but incorrectly, viewed as a mild sicca (dryness) disease with only occasional systemic (non-sicca) involvement. Sjogren’s is always systemic. People with Sjogren’s must be diagnosed with Sjogren’s to access and benefit from new treatments. Right now, most people with Sjogren’s remain undiagnosed.
I've been a passionate advocate for the Sjogren's community for more than a decade.
My deep understanding of the patient experience combined with the extensive research I do for Sjogren's Advocate allows me to act as a powerful voice for people with Sjogren’s who struggle to find care.
I use both top-down and bottom-up strategies to advocate for Sjogren’s.
I initially advocated for change from the top-down. However, I could not convince rheumatology organizations and institutions to provide up-to-date clinician education on Sjogren’s.
So, I started Sjogren’s Advocate to help people with Sjogren’s advocate for themselves and the care they need.
Unfortunately, this bottom-up approach places an unfair burden on people with Sjogren’s.
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My advocacy extends far beyond Sjogren’s Advocate.
You may know me from my participation in 3 online support groups over the past 20 years.
Being in regular communication with people with Sjogren’s helps me understand the needs and pain points of the community. I often use links to Sjogren's Advocate to help individuals who post on Smart Patients and other platforms find relevant information and resources.
I save people with Sjogren’s time and money.
In addition to extensive reading and research, I attend continuing medical education (CME) programs, Sjogren’s Foundation National Patient Conferences, and the annual Dysautonomia International conferences to stay informed. I share what I've learned with the patient community through Sjogren's Advocate, my mailing list, and social media. I also highlight inconsistencies and outdated information that persist among Sjogren's experts.
I've contributed to the development of 3 of the Sjogren's Foundation's clinical practice guidelines.
My patient perspective and in-depth Sjogren's knowledge have helped shape these guidelines.
I raise awareness of Sjogren’s in the media.
I have given radio and newspaper interviews. I have written about Sjogren’s for "The Rheumatologist", and the Sjogren’s Foundation newsletters. I wrote an interview-style article for the Healio Rheumatology newsletter, "‘My own diagnosis was delayed’: Sjögren’s myths overshadow multi-system manifestations" that was published on October 11, 2024.
I strive to improve clinician and institutional understanding of Sjogren's through education and advocacy.
I have taught more than 200 primary care practitioners (PCPs), as well as ENTs, ophthalmologists, and rheumatologists about Sjogren’s via in person and video presentations. I use my X (Twitter) account, @SarahSchaferMD, to educate the medical community, counter myths about Sjogren’s, and advocate for better care.
I consistently urge Sjogren’s leaders and affiliated institutions to acknowledge the critical knowledge gaps surrounding the disease.
I have requested that routine guidelines for monitoring systemic manifestations and comorbidities be developed because there is no clear standard of care. Educational programs must directly confront misconceptions about Sjogren’s because these are a core cause of delayed diagnosis and inadequate care.
See Myth-busting for Rheumatologists to learn to learn more about my advocacy work and my call for medical educators and rheumatologists to provide up-to-date and accurate information about Sjogren's.
Top-down change is finally starting to happen.
My advocacy efforts have been making a difference.
The ACR has invited me to attend a meeting in January 2025,
where I will advocate for changes that are essential for achieving timely diagnosis and proper care. ​
I've requested that Kathy Hammitt, Vice President of Medical & Scientific Affairs at Sjogren's Foundation,
be invited to the meeting so that we can collaborate and present a unified message to the ACR.
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It would be tragic to drop the ball just as my advocacy, mainly through Sjogren’s Advocate, is gaining recognition in medical circles that are capable of transforming care for patients.
To date, I’ve been pursuing my mission as an unpaid volunteer.
I have willingly made great personal and financial sacrifices to advocate for patients over the years. However, with my deteriorating health and finances, this is not sustainable.
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For complex reasons, I cannot ask for direct donations to support Sjogren’s Advocate.
I’ve spent hours exploring a variety of funding sources; none of them, including a subscription model, has proven viable. Donations to Bexi’s GoFundMe campaign are much appreciated, but they are earmarked for Bexi’s essential work. Those funds don’t go to me or cover the substantial administrative costs of running Sjogren’s Advocate.​​
I can, and will gladly accept thank you gifts
for being a voice for people with Sjogren’s over the years.
I have many exciting ideas for new content, but none of these will happen if I need to focus on finding a way to meet my personal financial needs. Your generosity is much appreciated.
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HOW TO THANK ME
Updated 12-28-2024