BLOG | sjogrensadvocate

Working with PCPs

Updated 11-14-2023 Sjogren’s patients routinely encounter clinicians who know very little about their disease. When I teach PCPs, they...

Sarah Schafer, MD

Oct 22, 20192 min read

Sjogren's neglect IV - CME

Did you ever wonder how doctors stay up-to-date? They participate in continuing medical education programs (CME) in order to learn about...

Sarah Schafer, MD

Sep 25, 20193 min read

Sjogren's neglect III - medical education

Why doesn’t my doctor understand Sjogren’s? This has been a frequent complaint in online support groups over the years. Medical education...

Sarah Schafer, MD

Sep 16, 20194 min read

Sjogren's neglect II - rheumatologists

The biggest challenge that many Sjogren’s patients face is finding a rheumatologist who is engaged and up to date on their disease. Like...

Sarah Schafer, MD

Sep 7, 20194 min read

Sjogren's neglect I - introduction

Understanding why Sjogren's is often overlooked and misunderstood can help patients better advocate for themselves.

Sarah Schafer, MD

Aug 26, 20192 min read

Words Matter: Problematic Sjogren's Disease Terms

Medical terms used to describe Sjogren's are often misleading, and reinforce dismissive attitudes about the disease.

Sarah Schafer, MD

Jul 19, 20194 min read

Abysmal and unsustainable: our broken health care system

I often enjoy Dr. Milton Packer’s blog on MedPage Today. He often thinks “big picture” about medical practice. His recent post provides...

Sarah Schafer, MD

Jul 10, 20192 min read

Setting the Stage for Rheumatology Care

This blog post is designed to “set the stage” for working with rheumatologists. Understanding how the health care system impacts Sjogren’s care is important for effective self-advocacy. The big picture The U.S. health care system falls short when it comes to meeting the needs of complex disease patients. Procedures tend to be reimbursed handsomely, but the time spent communicating with patients is not. Lifespan is considered paramount, but “healthspan,” including quality of l

Sarah Schafer, MD

Jul 3, 20194 min read

Neuropathy: Maybe it's all connected... Updated 09-19-2022

Do you have any of these? 1. Relentless, profound physical fatigue 2. Brain fog: Mental fatigue/cognitive changes 3. Dizziness or...

Sarah Schafer, MD

May 10, 20193 min read

Exploring Sjogren's

Exploring Sjogren's Episode 1 - What is Sjogren's? Exploring Sjogren's Episode 2- Living with Sjogren's

Sarah Schafer, MD

May 8, 20191 min read

What are all those numbers in parentheses? Citations.

Citations can be extremely useful for self-advocacy, especially when addressing misconceptions about Sjogren’s. What is a citation? You have probably noticed the numbers inside parentheses that are scattered throughout the website and blog. These are citations. Citations tell you the specific references, such as articles from medical journals or books, that I use to back up the information that was written just prior to the citation. You can view the source (usually a journ

Sarah Schafer, MD

Apr 25, 20192 min read

Do you have dysautonomia?

Dysautonomia, or malfunction of the autonomic nervous system, is estimated to impact more than half of Sjogren's patients.

Sarah Schafer, MD

Apr 11, 20193 min read

Misconceptions about Classification Criteria

Classification Criteria are NOT diagnostic criteria. Many patients are told that they cannot have Sjogren's because they don't meet the CLASSIFICATION CRITERIA . This is simply incorrect . While many Sjogren's patients do meet the criteria, some do not. The Sjogren's Classification Criteria are necessarily strict because they were created to standardize research populations. They do not substitute for clinical judgment in individual patients. There are NO diagnostic criter

Sarah Schafer, MD

Mar 11, 20192 min read