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 life-altering 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 are familiar with 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 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 be 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 three 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 use links to Sjogren’s Advocate to help patients who post on these sites with their specific questions.
I save people with Sjogren’s time and money.
I attend continuing medical education (CME) programs, Sjogren’s Foundation National Patient Conferences, and the annual Dysautonomia International conferences so they don’t have to. I share what I’ve learned via Sjogren’s Advocate, X (Twitter), and Smart Patients.
I've contributed to the development of three of the Sjogren's Foundation's clinical practice guidelines.
My patient perspective has 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", "Healio Rheumatology" (an email newsletter), and the Sjogren’s Foundation newsletters.
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 more about advocacy work and my call for medical educators and rheumatologists to provide up-to-date, accurate information about Sjogren's.
Top-down change is finally starting to happen.
My advocacy efforts have been making a difference.
Sjogren’s Advocate recently caught the attention of two organizations that educate rheumatologists.
I now have the opportunity to make an impactful difference in Sjogren’s care from the top-down.
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 donations 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 10-11-2024