I'm passionate about people, science, and health care equity.
I did not start out wanting to be a doctor. I loved math and science so much that I initially studied engineering at UC Berkeley. Halfway through college, I realized that I wanted to help people, not fix or design things.
So, I switched majors and graduated with a degree in biochemistry and then studied medicine and public health.
Working as a public health medical doctor proved incredibly rewarding.
I particularly enjoyed working with underserved communities, where I could directly impact people's lives.
Click here for my CV.
ABOUT SARAH SCHAFER, MD
My fight for Sjogren's awareness.
​
At age 44, the public health career I loved was cut short by severe symptoms of undiagnosed Sjogren's and POTS.
Even though I was desperately ill and bedridden for 16-20 hours a day, when routine tests offered no explanation, my doctors stopped looking for answers and suggested that my symptoms were caused by stress.
I knew that I had a serious illness. My research skills helped me figure out that Sjogren’s was the likely culprit. Even though I did not have typical autoantibodies, I was able to use the medical literature to advocate for a diagnosis. This experience fueled my passion to help other patients navigate the healthcare system and find the care they need.
​
Despite disabling fatigue and pain, I have dedicated the past decade to improving Sjogren's awareness and care.
On average, I have four hours a day to do everything that requires standing or cognitive focus. Most of that time is spent working on Sjogren’s Advocate. Learn more about my Sjogren’s journey, and health challenges.
​
Misconceptions about Sjogren’s remain deeply rooted.
Most clinicians are doing their best but are not given the time, tools, or Sjogren’s training to provide comprehensive, up-to-date Sjogren’s care.
​
Top-down change is needed to improve clinician awareness and practice.
Top-down change requires Sjogren’s experts and rheumatology leaders to make Sjogren’s medical education a priority. My efforts to advocate for this have mostly been met with resistance or denial that there is a problem. Learn more about MY MISSION: TO BE A VOICE FOR PEOPLE WITH SJOGREN'S
​
Sjogren’s Advocate uses a bottom-up strategy to help people with Sjogren's get care.
People with Sjogren's do not have time for medical education to get it right. Sjogren’s Advocate empowers patients with self-advocacy tools they can use directly with their clinicians to get the care they need and deserve.
Sjogren’s Advocate bridges the gap between the reality of Sjogren’s
and the care people with Sjogren’s are offered.
What inspired me to start Sjogren’s Advocate?
​
1. My experience teaching clinicians about Sjogren’s (A wakeup call)
From 2016-2020, I taught local primary care practitioners (PCPs) about Sjogren’s. My goal was to show them how to recognize Sjogren’s and take the first steps to diagnosis. Before each session, I asked them questions to gauge their existing knowledge. I found it alarming that, of the more than 200 PCPs I taught, only one had ever attended a lecture on Sjogren’s. Many of them shared that they were told by trusted mentors that Sjogren’s is a rare, mild, dryness condition and not worth learning about. Dismissive, misleading messages like this are a major reason so many people with Sjogren’s remain undiagnosed. Read more about my experience teaching PCPs.
​
2. The devastating effect of Sjogren’s myths and misinformation on patient care
While the Sjogren’s Foundation and Johns Hopkins websites have excellent Sjogren’s information, popular medical websites such as the Cleveland Clinic, Mayo Clinic, and even the American College of Rheumatology (ACR) contain misleading information about Sjogren’s. Clinicians and the public have no way of knowing that normally reliable medical institutions are perpetuating outdated, inaccurate information about Sjogren’s.
Sjogren’s educators sometimes contribute to the misinformation problem. During three separate online clinician education programs in 2022, three different Sjogren’s experts wrongly stated that the Sjogren’s classification criteria must be fulfilled to diagnose the disease. This rigid checklist approach leaves many people with Sjogren’s undiagnosed and without essential care. People with Sjogren’s who do not fit the classification criteria are often told their symptoms are all in their head, causing emotional harm on top of medical neglect.
​
I was gratified when I finally witnessed a speaker at the 2024 Sjogren’s Foundation State of Sjogren’s conference say that many people who do have Sjogren’s do not fulfill the classification criteria. She emphasized that the classification criteria were intentionally narrow for research purposes and should not be used as a substitute for clinical judgment.
​
3. The patient community (Sjogren’s is a lonely disease)
Sjogren’s is a serious disease that is not taken seriously. I hear a steady stream of heartbreaking patient stories about dismissive and judgmental comments from doctors, families, and friends. This adds unnecessary suffering to the pain of living with a life-altering disease. Patient support groups are often the only place to find understanding, kindness, and practical advice.
I have been active in Sjogren’s support groups since 2003. These communities serve as a lifeline in a world where Sjogren’s is misunderstood and downplayed by clinicians, family, and friends. I have heard hundreds of stories from patients who struggled to find clinicians who are knowledgeable about Sjogren’s. While some people with Sjogren’s receive timely diagnosis and comprehensive care, this is the exception, not the norm.
On Sjogren's Advocate, I use credible information to show people with Sjogren’s
that they are not crazy or lazy, they are sick.
I show them how to use credible information to advocate for the care and support they need.
Sjogren’s Advocate offers help you cannot find anywhere else.
On Sjogren’s Advocate, I do the research for you and show you how to use science-based information to get the care you need.
My unique research skills make the information on Sjogren’s Advocate powerful. I draw on my training in science, math, and statistics (these are not a standard part of medical education) to read and analyze Sjogren’s literature. I then synthesize and curate the information and translate it into material that helps patients work with their doctors.
Unlike other websites, I publish links to citations so patients and their clinicians can refer to my source material.
"The work you did on the Systemic and Pulmonary Manifestations of Sjogren's has allowed me to get a COPD diagnosis."
​
~ Sjogren's patient
“My rheumatologist is willing to order a lip biopsy!
I wouldn’t have been able to advocate as well if I didn’t have your handouts.”
~ Person seeking diagnosis
The Sjogren’s literature is often flawed, sloppy, and based on outdated assumptions, even when it is peer reviewed.
I do not take what I read at face value. I critically evaluate each article that I use on Sjogren’s Advocate. I consider how biases and assumptions impact the quality of the study, and whether the authors’ conclusions are supported by evidence. I use and share what is valid and helpful.
I use Sjogren’s Advocate to show how poorly designed studies negatively impact care and what patients can do about this.
For example, hydroxychloroquine (HCQ) is recommended for use in Sjogren’s by multiple clinical practice guidelines across the world. Despite these recommendations, there are rheumatologists who still will not prescribe HCQ, citing a single, highly flawed study called the JOQUER trial as the reason why. My blog post, HCQ II, explains why the JOQUER study should not be used to make treatment decisions and empowers patients (when appropriate) to advocate for treatment with HCQ.
On Sjogren’s Advocate, I do not simply provide information
and tell you to talk to your doctor.
​
I give you the tools to talk to your doctor.
I show you:
1. what information you can trust,
2. how to advocate for proper diagnosis and care,
3. how to advocate for your specific needs,
4. how to counter myths and misinformation, and
5. how to talk to your clinicians to get the care you need.
You cannot find help like this anywhere else.
I will need your help to keep Sjogren's Advocate going.
I have gifted Sjogren’s Advocate to the community for the past five years. I can no longer sustain the financial burden of running it on my own.
Sjogren’s Advocate has been a labor of love, but an increasingly expensive and labor-intensive one. Each main webpage takes 50-plus hours to research, write, design, and publish. I have spent 1000s of hours of unpaid time advocating for Sjogren’s patients in multiple ways. I have used my own savings to pay for the considerable administrative costs of publishing and maintaining Sjogren’s Advocate. I can no longer continue to do this.
Donations made to Bexi’s GoFundMe do not cover my time or the administrative costs of running Sjogren’s Advocate.
We ask for your continued support of Bexi's GoFundMe campaign while we figure out what happens next. Without Bexi's support over the past two years, Sjogren's Advocate would not exist today. Thank you for your generous donations to date, they have made a big difference.
However, I can and will gladly accept thank you gifts for being a voice for people with Sjogren’s over the years. Your generosity is much appreciated.
​
How To Send Dr. Sarah Schafer A Thank You Gift​
Updated 07-18-2024