World Sjögren's Day

Wednesday 23 July 2014 is World Sjögren's Day.  World what?


First of all, that word is pronounced "show-grens", and today is a day to raise awareness of Sjögren's Syndrome. 

Sjögren's Syndrome is the condition which forced Venus Williams to withdraw from the US Open Tennis Tournament in 2011.  The effects range from mild to severe.  Ms Williams is quoted as saying, "I couldn't raise my arm over my head, the racket felt like concrete. I had no feelings in my hands. They were swollen and itchy." Venus Williams is now a Sjögren's Awareness Ambassador.* 

It is an autoimmune condition named after the Swedish opthalmologist Dr Henrik Sjögren (1899-1986) who first identified the condition. 

An autoimmune process is where the body's immune system attacks its own cells instead of 'foreign invaders' like viruses or bacteria from outside the body. ('Auto' comes from Greek and means 'self'). In other words, the body attacks itself! One of the side effects is fatigue as the body is either continually fighting or continually trying to repair the damage.

In the case of Sjögren's Syndrome, the immune system most often attacks the moisture producing glands, typically salivary and tear glands, but can also affect other bodily tissues.  People with Sjögren's Syndrome usually have difficulties with dry eyes and a dry mouth which can cause other complications but symptoms are not limited to eyes and mouth only. 

For specific information about Sjögren's Syndrome, I have compiled a Resource Page where you will find links to more detailed information. You will find it at the top of this page underneath the Lupey Loops masthead.

For me, it is all part of my mixed connective tissue disease (MCTD) profile.  It is called 'mixed' because the symptoms reflect a mixture of autoimmune conditions, and the pattern is not typical of any one condition alone like lupus, scleroderma or Sjögren's Syndrome.

I have the dry eyes and the dry mouth plus other symptoms.  When dryness becomes a problem, my eyes get sore and itchy and feel rough as if they have sand or some other irritant in them.  It also manifests in my eyes getting tired easily when watching television, using the computer or reading. During these activities, my eyes will begin to sting after a certain length of time and I will need to close them for a while. Artificial tears in the form of eye drops bring some relief.

The dry mouth requires special attention to oral hygiene.  Reduced saliva can create the perfect environment for bacteria and tooth decay. To manage this, I see a dentist who has specialist knowledge of autoimmune problems and I also have special gels which create an 'artificial saliva' in the mouth. I have found that special chewing gums specifically designed to relieve a dry mouth are effective but they are also expensive.  I am not a great fan of gum chewing so I don't use them much.

Sjögren's Syndrome is well-known for causing dryness and other symptoms in other parts of the body. It can affect the skin, joints, lungs, kidneys, blood vessels, and nervous system.

Symptoms include:

• dry skin and skin rashes
• thyroid problems
• joint and muscle pain
• pneumonia
• vaginal dryness
• numbness and tingling in the extremities.

Sjögren's Syndrome can cause digestive problems from inflammation in the oesophagus, stomach, pancreas and liver.  I have suffered digestive problems including heartburn, malabsorption and weight loss, difficulty swallowing and severe inflammation within the digestive tract.  I can only guess that Sjögren's and scleroderma have both played a part in these symptoms.

Other connective tissue disorders are common among people with Sjögren's Syndrome; e.g.: 

• polymyositis
• Raynaud's phenomenon
• rheumatoid arthritis
• scleroderma
• systemic lupus erythematosus (SLE or lupus for short)
• vasculitis
• autoimmune thyroid disorders such as Grave's or Hashimoto's diseases.

Many people with Sjögren's Syndrome show evidence of thyroid disease. 

Sarah Wilson is an Australian wellness coach, television presenter, author and journalist who blogs about healthy living and life with thyroid disease. She has compiled a list of symptoms related to thydroid disease in this post: http://www.sarahwilson.com/2014/07/300-typical-thyroid-symptoms-yep-that-many.

Dr Henrik Sjögren's birthday, 23 July, has been chosen as World Sjögren's Day to bring people around the world together to raise awareness about Sjögren's Syndrome.

• I am doing my little bit with my blog. 
• The Autoimmune Resource & Research Centre (ARRC) have released a new brochure.
• The Australian Sjögren's Syndrome Association has written about World Sjögren's Day in a Facebook entry with an invitation to donate or sign up as a member. 

If you know of any other special happenings in relation to World Sjögren's Day, please let me know.

Thank you for taking the time to read this post. I do hope that you will visit my Sjögren's Resources page and explore the links to further information that you will find there.

If you have Sjögren's Syndrome yourself, feel free to introduce yourself with a comment below or drop me an email at jodiebodiecrochets@gmail.com.

Part of World Sjögren's Day is sharing and supporting one another.

Links & References

Autoimmune Awareness, Autoimmune Resource & Research Centre (ARRC), (previously known as the Scleroderma Lupus Autoimmune Resource Centre), John Hunter Hospital, Newcastle, NSW Australia: http://www.autoimmune.org.au/awareness/.aspx

Autoimmune Resource & Research Centre (ARRC), World Sjögren's Day, Newcastle, NSW Australia, 23 July  2014: 
http://www.autoimmune.org.au/Calendar-of-Events/.aspx?newsID=9290
ARRC have published a new Sjögren's brochure to commemorate World Sjögren's Day.

Autoimmune Resource & Research Centre (ARRC), Sjögrens Syndrome: What Is Sjögrens?, brochure, Newcastle, NSW Australia, 23 July 2014: http://www.autoimmune.org.au/SiteFiles/autoimmunecomau/sjogrens-brochure.pdf

Clark, Cheri, Questions & Answers about Sjögren's Syndrome, booklet, Arthritis Foundation of South Australia, National Institute of Arthritis and Muscoloskeletal and Skin Diseases, NIAMS/National Institutes of Health. 1 AMS Circle, Bethesda, MD 20892-3675, USA.
This booklet was printed by the Arthritis Foundation of South Australia and originally produced by NIAMS/National Institutes of Health, U.S.A. It can also be found on the NIAMS web site at <www.niams.nih.gov/hi/topics/sjogrens/index.htm>

Lupey Loops, Sjögren's Resources, web page, <http://lupeyloops.blogspot.com.au/p/sj.html>
This page has links to information about Sjögren's Syndrome and related support organisations, and other useful links about living with chronic illness.

Sjögren's Syndrome Foundation, "World Sjögren's Day - July 23", article, <http://www.sjogrens.org/home/about-the-foundation/worldsjogrensday->, USA, 17 July 2012.

Wilson, Sarah, "300 "typical" thyroid symptoms (yep, that many!)", blog entry, <http://www.sarahwilson.com/2014/07/300-typical-thyroid-symptoms-yep-that-many>, Sydney, Australia, 15 July 2014.

The Australian Sjögren's Syndrome Association (TASSA), "World Sjögren's Day", Facebook entry, <https://www.facebook.com/SjogrensAustralia/photos/a.556511434395766.1073741824.203535893026657/750876411625933/?type=1&theater>, Mullumbimby NSW, Australia, 20 July 2014.

Wilson, Sarah, Sarah Wilson - this blog makes life better, sweeter., blog,  <http://www.sarahwilson.com/>, Sarah Wilson, blogger, wellness coach, author, journalist, television presenter, Sydney, Australia 2014.

* Links about Venus Williams

• Denton, Nikki, "Venus Williams diagnosed with Sjogrens [sic], local woman heads awareness campaign", online news article, <http://newpittsburghcourieronline.com/2013/08/13/venus-williams-diagnosed-with-sjogrens-local-woman-heads-awareness-campaign/>, New Pittsburgh Courier, USA, 13 August 2013.
  The main focus of this 'local news' article is the diagnostic journey and awareness campaign of a Pittsburgh woman with quotes from Venus Williams. There are excellent descriptions of what happens in Sjögren's Syndrome and links it to other disorders like lupus. It mentions brain fog, dryness and the common time lag to reach a diagnosis. It includes links at the end of the article and one woman's blog.

• Gecker, Jocelyn, "Venus Williams Talks About Being Vegan and Playing Tennis After Being Diagnosed with Sjogren's [sic] Syndrome", online news article, Huff Post 'Black Voices' section, <http://www.huffingtonpost.com/2013/01/14/venus-williams-talks-about-being-vegan-tennis_n_2471057.html>, The Huffington Post US Edition, USA, 14 January 2013.
  Dateline: Melbourne. Venus Williams discusses diet, lifestyle changes and how she likes to "focus on the things I can accomplish and not to think about the things that I can't do."

• Masters, James & Cash, Pat, "Venus Williams: the champion trying to slam Sjogren's [sic] Syndrome", online news article, CNN International Edition 'Open Court' tennis section,  <http://edition.cnn.com/2014/03/20/sport/tennis/venus-williams-sjogrens-syndrome/>, Cable News Network, Time Warner Inc., USA, 21 March 2014.
  "We wanted to know why she got tired and why she never woke up with any energy." This article quotes both Serena and Venus Williams as they discuss Venus' adjustment to her diagnosis. It also discusses the diagnostic journey and prevalence of Sjögren's in the USA.

• Quigley, Rachel, "'I won't let it beat me:' Venus Williams opens up about being diagnosed with incurable Sjogren's [sic] Syndrome at 31", online news article, <http://www.dailymail.co.uk/news/article-2079539/Sjogrens-Syndrome-Venus-Williams-opens-incurable-disease.html> Daily Mail, 29 December 2011; Associated Newspapers Ltd, dmg media, <http://www.dmgmedia.co.uk/>, UK, 2014.
  This article contains a sidebar about Sjögren's and its effects.

• Sjögren's Syndrome Foundation, "Awareness Ambassadors", online article, 'Get Connected' tab, Sjögren's Syndrome Foundation web site  <http://www.sjogrens.org/home/get-connected/awareness-ambassador> USA, 2013.
  "The Sjögren’s Syndrome Foundation is excited to announce Venus Williams as the Honorary Chairperson of our Carroll Petrie Foundation Sjögren’s Awareness Ambassador Program."

• Williams, Venus, interview with Katie Couric, Katie Couric Talk Show, online video, <http://katiecouric.com/2013/07/11/robin-roberts-nine-for-ix-venus-williams-whoopi-goldberg-hannah-storm/>  KAC Productions, USA, 11 July 2013.
  Venus Williams explains Sjögren's Syndrome and what it was like trying to get a diagnosis.  I like her metaphor of "driving with a faulty gas gauge" in relation to fatigue.

• Williams, Venus, Venus Williams, official web site, <http://venuswilliams.com/>, USA, 2012.

• Williams, Venus, "Venus A.D. (After Diagnosis)", Venus Williams web site, 'My Life' section, 'Venus' menu,  <http://venuswilliams.com/venus/>, USA, 2012.
  Venus' own words in a short biography of her career.