Sjogren's Advocate is for education and information purposes only.
Patients: While I am a physician, I am not your physician and cannot give you medical advice.
Decisions about your medical care must be made directly with your clinician(s).
I love to hear patient stories, both triumphs and struggles, but please do not send me detailed medical information such as lab reports, X-rays, medication lists, or clinician notes. I encourage you to join Smart Patients and post questions to the Sjogren's patient community.
The practical information contained on this website is not an “official” guideline approved by the Sjogren's Foundation or any academic institution or rheumatology organization. In an ideal world, a website like this would not be needed. Medical schools and residency programs would provide training in keeping with such a common and serious disease. Because Sjogren's is a neglected disease, I provide strategies for patients and primary care providers (PCPs) to promote earlier diagnosis and better Sjogren's care.
Sjogren’s Advocate is completely independent of the Sjogren’s Foundation.
I am solely responsible for all content and opinions herein. The opinions expressed in this website are my own and do not represent the Sjogren's Foundation. Please do not contact the Sjogren's Foundation to ask them about Sjogren's Advocate.
My objective is to complement, not replace, the wide range of excellent information provided by the Sjogren’s Foundation. I often highlight the Foundation's many resources such as educational brochures, the Exploring Sjogren's videos, and the Clinical Practice Guidelines.
I support the Sjogren's Foundation in many ways. I provided input as a patient during the creation of two of the Clinical Practice Guidelines. This work is separate from my work on Sjogren's Advocate. Both are volunteer endeavors with the same goal of improving Sjogren's care.
The contents of Sjogren's Advocate are not officially sanctioned by the Sjogren's Foundation, or any rheumatology, educational, or medical organization.
My writing represents my own analysis, as an informed physician-patient, of the state of Sjogren's education, research, and clinical care. I draw on my experience as a PCP (no longer practicing medicine), patient, and medical educator. I read the medical and scientific literature extensively, with a critical eye, and have done so for many years. My aim is to distill complex information into "plain English" so patients can work together with their clinicians toward comprehensive Sjogren's care.
Because I am not a part of any organization or academic institution, I am free to express my opinions about why Sjogren's care so often falls short. Understanding the reasons behind Sjogren's neglect can help patients and PCPs strategize and advocate for comprehensive care.
I have no conflicts of interest.
I do not advertise, promote, or sell products. I do not have any ties to the health care industry or drug companies. I do not recommend treatments. I do discuss treatment concepts, including research about medications and non-pharmacological treatments.
How to share content from Sjogren's Advocate
Private sharing of this website content is encouraged. Public sharing requires an attribution to this website as the source. You may copy and print website material for your personal use. Any electronic copies of the contents (e.g., posting content in a blog that you write), or use in newsletters or publications, must attribute this Sjogren's Advocate as the source.
Sjogren's Advocate addresses Sjogren’s in adult patients.
Sjogren's Advocate does not attempt to address pediatric Sjogren's. While Sjogren’s was once though to be extremely rare in children, more cases are being recognized. Many adult patients remember symptoms starting in childhood. This suggests that the disease starts far earlier than middle age, when it is most likely to be be diagnosed. Children with Sjogren’s often present with atypical and incomplete clinical features. Current tests rarely pick up early disease, missing the opportunity for early diagnosis and treatment.