Sjogren’s Syndrome Associations by Country
Sjogren’s Syndrome Foundation (U.S.) – https://www.sjogrens.org
Sjogren’s Society of Canada – https://sjogrenscanada.org
The British Sjogren’s Syndrome Association – https://www.bssa.uk.net
The Australian Sjogren’s Syndrome Association – https://www.sjogrens.org.au
Other Websites with Comprehensive Reviews of Sjogren’s Symptoms
These sites do an excellent job of giving a good picture of disease symptoms, although should be considered secondary sources to information provided by the above associations.
MedicineNet.com = https://www.medicinenet.com/sjogrens_syndrome/article.htm
U.K. National Health Service – https://www.nhs.uk/Conditions/Sjogrens-syndrome/Pages/Introduction.aspx
U.S. National Institute of Health – https://www.niams.nih.gov/Health_Info/Sjogrens_Syndrome/default.asp
Formal Diagnosis Criteria
American-European Consensus Sjögren’s Classification Criteria: https://www.sjogrens.org/home/research-programs/healthcare-providers/diagnosis-criteria
Sjogren’s Syndrome Support Websites and Forums
I include these for completeness as I have browsed these forums for answers to questions, but I am not a regular visitor on any support sites at this time and cannot vouch for their friendliness or level of support.
Sjogren’s World – https://www.sjogrensworld.org
Sjogren’s Syndrome Support – https://www.sjogrenssyndromesupport.org
Sjogren’s Syndrome Support Group at Daily Strength – https://www.dailystrength.org/c/Sjogrens-Syndrome/support-group
Life with Sjogren’s – Personal Stories and Portraits
Lynne’s Page About Sjogren’s Syndrome – https://www.lynne-sjogrens.org – has lots of personal stories in the ‘Stories’ section – makes you feel not so alone!
Schlero.org – https://www.sclero.org/scleroderma/symptoms/sjogrens/stories.html – stories about people with Sjogren’s syndrome.
Faces of Sjogren’s (presented by the U.S. SSF) – https://www.sjogrens.org/home/get-connected/faces-of-sjogrens – portraits and brief stories from people with Sjogren’s syndrome.
Patient Voices: Sjogren’s Syndrome – https://www.nytimes.com/interactive/2011/09/16/health/healthguide/sjogrens_syndrome.html?_r=0 – audio-based stories from people with Sjogren’s syndrome.
Jodi McKee Portrait Project – https://www.jodimckee.com/portrait-project/ – portraits and brief interview-style stories.
Public Figures with Sjogren’s Syndrome
Good Morning America Interview with tennis superstar, Venus Williams – https://www.youtube.com/watch?v=fsIfOLuCNRM – I found this personally very validating as I found lots of commonalities in how Sjogren’s manifested for Venus Williams, e.g. initially being diagnosed with exercise-induced asthma due to not being able to get enough air during exercise.
Blogs with a Focus on Sjogren’s Syndrome
Reasonably Well – https://reasonablywell-julia.blogspot.ca
Blackbird at Night – https://blackbirdatnight.com
Autoimmune Gal – https://autoimmunegal.blogspot.ca
Sjogren’s Blog – https://sjogrenssyndrome.blogspot.ca
Sjodry & Parched – https://sjodry.wordpress.com/
Specific Symptoms – Skin
Reasonably Well – The Skinny on Autoimmune Skin – https://reasonablywell-julia.blogspot.ca/2009/10/skinny-on-autoimmune-skin.html
American Family Physician review article – Differential Diagnosis of Annular Lesions – https://www.aafp.org/afp/2001/0715/p289.html
Specific Symptoms – Kidneys
Reasonably Well – Sjogren’s Syndrome and Kidneys – https://reasonablywell-julia.blogspot.ca/2008/06/sjogrens-syndrome-and-kidneys.html
Annals of Internal Medicine research article – Interstitial Nephritis in Sjogren’s Syndrome – https://annals.org/article.aspx?articleid=682832
Specific Symptoms – Anxiety and Depression
Sjogren’s has a measurable impact on quality of life through increased rates of depression and anxiety.
Health and Quality of Life Outcomes research article – Primary Sjogren’s Syndrome: health experiences and predictors of health quality among patients in the United States – https://www.biomedcentral.com/content/pdf/1477-7525-7-46.pdf
The Journal of Rheumatology research article – Anxiety and depression in patients with primary Sjogren’s syndrome – https://www.ncbi.nlm.nih.gov/pubmed/10648034
Clinical and Experimental Rheumatology research article – Psychological well-being in patients with primary Sjogren’s syndrome – https://europepmc.org/abstract/MED/11072600
Specific Symptoms – Saliva Flow
Annals of the Rheumatic Diseases – Measurement of whole unstimulated salivary flow in the diagnosis of Sjögren’s syndrome – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1004700/
Specific Symptoms – Taste and Smell
Rheumatology – Impact of primary Sjogren’s syndrome on smell and taste: effect on quality of life – https://rheumatology.oxfordjournals.org/content/48/12/1512.full
Specific Symptoms – Blood Tests
Annals of the Rheumatic Diseases – Serum immune globulins in Sjogren’s syndrome – https://ard.bmj.com/content/29/6/681.full.pdf
Journal of Allergy and Clinical Immunology – Diagnostic Testing and Interpretation of Tests for Autoimmunity – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2832720/ – Very helpful guide (not quite plain language!) to the most commonly ordered blood tests for autoimmune disorders.
Lupus Foundation of America – https://www.lupus.org/answers/entry/lupus-tests – These tests are for Lupus, but information about ANA, SSA/SSB and RF is relevant as these tests are often considered important in a diagnosis of Sjogren’s syndrome. The CRP/ESR tests are non-specific tests indicating inflammation in the body.
U.S. Sjogren’s Syndrome Foundation – https://www.sjogrens.org/home/about-sjogrens-syndrome/diagnosis
If you have been diagnosed on the basis of the overall symptom picture, despite negative bloodwork, search Google for “seronegative Sjogren’s” to find many stories of people who were diagnosed with or experience all the symptoms of Sjogren’s Syndrome without positive findings on key blood tests.
The New Sjogren’s Syndrome Handbook by the U.S. Sjogren’s Syndrome Foundation – If you have Sjogren’s syndrome you will want to read this book.
Keeping a History of Treatments and their Effectiveness
It helps to ask for copies of all laboratory and test results, doctor referrals and reports, and surgery/procedure reports. It may not seem important now, but in 10 years it may be! Also, if you are anything like me, you can be overwhelmed by too much information during a doctor’s appointment. Having information in writing helps, especially if you do not have an advocate attending the appointment with you.
PatientsLikeMe.com – https://www.patientslikeme.com/conditions/43 – This website helps you to keep track of your medical history, treatments and their effectiveness. Over time, patterns may emerge in certain tests that doctors may not see at individual appointments. There are presently over 850 people reporting a Sjogren’s syndrome diagnosis on the site. The site does not yet have strengths in associating more than dry eye and dry mouth treatments to Sjogren’s, but with the search function you can see other patient’s experiences with specific medications or treatments. Like any subjective assessment, take individual reviews with a grain of salt.
Daily Strength Sjogren’s Syndrome Support Group – https://www.dailystrength.org/treatments/support-groups/Sjogrens-Syndrome – This website gives a better overview of most common treatment options and patient reviews of those treatments.
RateMDs.com – https://www.ratemds.com – This website tabulates patient reviews of doctors, and rates them based on knowledge, helpfulness, punctuality and staff. Again, take reviews with a grain of salt, but these reviews can help you research a new doctor and find out if they have consistent reports of prejudices for/against the diagnosis or treatment of certain conditions, whether they are willing to work with the patient as an equal partner in the process, and of course, whether they are rude or abusive. This information may help to avoid unexpected surprises in an initial visit with a new doctor.
Patient Advocacy Sites
WEGO Health – https://www.wegohealth.com – WEGO Health provides a platform to help people with challenges network with other patients and caregivers, and encourages people to become health activists. WEGO Health uses social media extensively including regular blogging challenges (April is Health Activist Writer’s Month Challenge), posts on its Facebook page and events pages, weekly Twitter chats using the #HAchat hashtag on general and condition-specific health topics, and Pinterest. The value of this platform is finding other advocates with your condition and increased exposure for your advocacy efforts by giving you access to a broader audience.