FOR PEOPLE WITH SJOGREN'S
Pace yourself as you browse Sjogren's Advocate.
You may feel overwhelmed by all of the new medical information and terminology.
It is a lot to take in when you are feeling sick and vulnerable.
Read through pages or blog posts without clicking links or looking up vocabulary the first time through. Then go back and re-read the information, checking unfamiliar terms or links to help you understand the material.
A WORD OF CAUTION
Some areas of Sjogren's Advocate discuss the disconnect between the needs of Sjogren's patients and typical Sjogren's care.
Understanding why Sjogren's care often falls short is the first step to knowing how to advocate for comprehensive care.
However, if this topic feels overwhelming and upsetting to think about,
you may want to limit yourself to the Sjogren's Foundation website for now.
How Sjogren's Advocate may help you
Not all clinicians know that Sjogren's is a serious disease that can affect any part of your body.
Learning as much as you can about Sjogren's, what the medical system is taught and what the research shows is key to advocating for up-to-date medical care. Bring notes and carefully selected HANDOUTS FOR CLINICIANS to your appointments. Printouts of journal articles (use the CITATIONS) for your rheumatologist or PCP may be used to help you discuss your concerns. Local and online support groups such as Smart Patients are good resources for referrals, practical tips, and emotional support.
PCPs are often interested in Sjogren's Advocate material. However, I don't generally recommend printing out Sjogren's Advocate pages or blog posts for rheumatologists unless they are familiar with, and supportive of, the website. Rheumatologists may not be receptive to information written by a non-rheumatologist. They are more likely to be receptive to journal articles from peer-reviewed literature and other academic sources.
The citations allow you to take in articles (or abstracts of articles) about the topics you read about on Sjogren's Advocate
Why do people with Sjogren's have such a hard time getting diagnosed and then getting appropriate medical care?
Rheumatologists are the specialists who are supposed to take the lead in Sjogren’s management.
In the United States, most rheumatologists look to the American College of Rheumatology (ACR) as their main source of clinical guidance.
Unfortunately, the ACR fails to publish and promote the Sjogren’s Clinical Practice Guidelines.
ACR meetings and other continuing medical education programs repeatedly fail to update Sjogren's information or they leave it out altogether.
Read more ABOUT SELF-ADVOCACY for appropriate monitoring and care of Sjogren's.
Why I Created Sjogren's Advocate.
Ignoring Sjogren’s and promoting outdated, incorrect information harms patients.
Many patients are diagnosed late, typically after the disease has far progressed. Too often, they are dismissed, psychologized, and told incorrect information. Many are denied appropriate monitoring, treatment, and referrals even after diagnosis.
I learned early on how to use the medical literature to improve my own care, especially when I had complications with which my clinicians were not familiar. I want other patients and PCPs to benefit from reliable scientific information without spending hours every week, like I do, learning about Sjogren’s.
I am passionate about helping other Sjogren’s patients because my personal experience has been so devastating. Like many, my diagnosis was long delayed despite being extremely ill. Most clinicians that I encounter to this day remain unfamiliar with Sjogren's. This should not happen for such a common, serious, systemic disease.
I would like to thank the many volunteers, especially Bexi Lobo, who have helped me with design and editing. You have helped make this website so much better.
Read more ABOUT DR. SCHAFER.
SUBSCRIBE to my mailing list for updates.
SELF - ADVOCACY
If you see adult patients, you are seeing Sjogren’s patients, mostly undiagnosed (15).
Sjogren’s is a COMMON, SERIOUS, always SYSTEMIC disease, with significant morbidity.
Many primary care physicians (PCPs) who attend my lectures are shocked to learn that Sjogren’s can actually be fatal (24). They have usually been taught that Sjogren's is an unimportant dryness disease.
PCPs are often the first clinicians to encounter early Sjogren's presentations. When Sjogren's is diagnosed early enough, it can make a big difference in outcome and quality of life. Unfortunately, most patients experience years, and sometimes decades, of disease progression before they finally get care.
Sjogren’s Advocate helps you learn to recognize Sjogren’s and take the first steps to diagnosis.
Sjogren’s Advocate makes it easy for you to take action and explains your important role on your Sjogren’s patient's health care team.
Thanks for your patience.
Note: Sjogren's Advocate is not part of the Sjogren's Foundation.