Lady of the Lake © 2004 Jane Waterman
Lady of the Lake © 2004 Jane Waterman

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.

Schlero.org – https://www.sclero.org/scleroderma/symptoms/sjogrens/a-to-z.html

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

Life Extension – https://www.lef.org/protocols/immune-connective-joint/sjogren-syndrome/Page-01

 

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 Kidneyshttps://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.

 

Blood Tests

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.

 

Reference Books

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.