Sjogren's Advocate was created for education and information purposes only
Patients: Please do not write to me asking for personal medical advice or referrals to medical providers.
I am highlighting this because despite frequent reminders, I still get emails asking for these things. 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 labs reports, X-rays, medication lists, or clinician notes. I happy to answer general questions when I can.
I know that having Sjogren’s can make you feel isolated, hopeless and confused. Luckily, there is a wonderfully supportive community of Sjogren’s patients, at various stages and degrees of the disease, in the online Sjogren’s support group on Smart Patients. I encourage you to join and pose your questions to the community at large.
The information on Sjogren’s Advocate does not substitute for medical diagnosis and treatment. I do not provide medical or professional advice for individual patients. Sjogren's Advocate is designed to support, not to replace, the advice of physicians or other health care professionals. Each patient is unique. Clinicians should use their best judgment, taking into account the needs of the individual patient, as well as the medical system that they work in. Information on this website is to be used solely at your own risk.
The practical information contained on this website is not an “official” guideline approved by the Sjogren's Foundation or any medical board 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 neglected, 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. The opinions expressed in this website are my own and do not represent the Sjogren's Foundation.
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 gave input as a patient representative 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, patient, and medical educator. I read the medical and scientific literature extensively, 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 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.
This website addresses Sjogren’s in adult patients.
While Sjogren’s is not common in children, it does occur, probably much more commonly than previously thought. Children with Sjogren’s tend to present with atypical and incomplete clinical features. Sjogren's Advocate does not attempt to address pediatric Sjogren's.