Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

World Sjogren's Day is July 23!

Posted on Wed, Jul 15, 2015

SSF_World_Sjogrens_DayHappy Birthday Dr. Sjögren's!

World Sjögren's Day was created to commemorate the birthday of Dr. Henrik Sjögren, the Swedish ophthalmologist who discovered Sjögren's in 1933, which has helped all patients find answers to their health questions.

This July 23rd, the Sjögren's Syndrome Foundation (SSF) joins with other Sjögren's organizations around the world to celebrate the 6th annual World Sjögren's Day and what would have been Dr. Sjögren's 116th birthday. World Sjögren's Day also allows us to recognize advancements made in Sjögren's this past year and the incredible progress the SSF has made on behalf of Sjögren's patients.

henrik_sjogren1-1

Sjögren’s (SHOW-grins) is a chronic autoimmune inflammatory disease in which people’s white blood cells attack their moisture-producing glands. Four primary symptoms include fatigue, joint pain, dry eye and dry mouth, but Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system.

World Sjögren's Day creates an ideal opportunity for you to talk about Sjögren's with the people in your life and provide much needed awareness for this common yet little known disease. By sharing your story, you are helping share the message that Sjögren's is a serious and life-altering disease and it deserves to be recognized.

Together we can transform the future of Sjögren's!
Learn more about World Sjögren's Day   & how to create a personal fundraising page!

Topics: Diagnosing Sjogren's, World Sjogren's Day, Sjogren's

Venus Williams Opens Up about Living with Sjogren's

Posted on Fri, Jul 12, 2013

Learning what your new “normal” is when living with Sjögren’s can be a very difficult but an important process.  Take a tip from Venus Williams about understanding what your body needs and never giving up.

describe the imageA year after carrying the Olympic torch through the streets of London on World Sjögren’s Day, July 23, Venus once again stood up for all patients by appearing on Katie Couric’s daytime TV show "Katie" yesterday and discussed how she’s had to adjust her life in order to effectively manage her symptoms.  When talking about her recent withdrawal from Wimbledon due to injury, Venus said “I have to be careful of how much I do now” and explained that it takes her more time to recover and that’s something she has to be ok with.

Early diagnosis and treatment are important for preventing complications with Sjögren’s. Unfortunately, reaching a diagnosis is often difficult and has been found to take an average of over 4.7, which is why in 2012 the SSF launched a 5-Year Breakthrough Goal:

“To shorten the time to diagnose Sjogren’s by 50% in 5 years!”

 Venus opened up to Katie about her struggle with being diagnosed saying, "When you’re so tired it’s hard to explain but the quality of your life goes down. I’d go to the doctor and say I don’t feel good and they didn’t know why.”

After enthusiastically shooting down rumors about retiring, Venus added that she sees the present as her chance to get better and finally understand why she didn’t feel well before being diagnosed.  Venus shows her courage by sharing her story as a way to help other patients. That is why the Foundation is thrilled to have her as the Honorary Chairperson of our Carroll Petrie Foundation Sjögren’s Awareness Ambassador Program.

We hope Venus inspires you to talk more about Sjögren’s in your life and take control of your health by joining as an SSF member to receive our monthly educational newsletter The Moisture Seekers and add your voice to our fight against Sjögren’s.  Help us change the face of Sjögren’s and help all patients receive the care needed! 

 

Click Here to  Become an SSF Member

Topics: World Sjogren's Day, Sjogren's, Advocacy, Venus Williams

Help us Celebrate World Sjogren's Day- July 23, 2013

Posted on Wed, Jul 10, 2013

Dr Sjogren

World Sjögren's Day was created to commemorate the birthday of Dr. Henrik Sjögren, a Swedish ophthalmologist, who discovered Sjögren's in 1933.

On July 23rd, the Sjögren's Syndrome Foundation will join with other Sjögren's organizations around the world to celebrate the 4th annual World Sjögren's Day and what would have been Dr. Henrik Sjögren's 114th birthday. 

How Can You Help Make A Difference?

  • Make a donation to World Sjögren's Day and help us continue to further Sjögren's research, shorten the time it takes to diagnose and encourage new therapuetics. Click Here to make a donation in honor of World Sjögren's Day. Every gift will go to support research and education for the disease that Dr. Sjögren devoted his life to.
     
  • Help increase awareness and raise funds by creating your own personalized fundraising page by clicking here. Share your story and educate your family & friends about Sjögren's while raising much needed funds to help further the research efforts of the SSF.
     
  • Click here to print a fact sheet and use it to share information about Sjögren's with your friends, family, neighbors, work colleagues and local community. This is an ideal opportunity to help raise awareness for this little known but very common disease.


You can make a difference!

 Please comment below and share with us how you're planning to celebrate World Sjögren’s Day. Or let us know what it was like to talk to someone in your life about Sjögren’s.

Topics: World Sjogren's Day, Sjogren's

Venus Williams Stands up for Sjogren's Awareness!

Posted on Thu, Dec 13, 2012

On July 23rd, 2012 the Sjögren’s Syndrome Foundation joined with other Sjögren’s groups around the world to celebrate World Sjögren’s DayWorld Sjögren’s Day and got a BIG boost from Venus Williams, professional tennis player and Olympic Gold Medalist as well as fellow Sjogren’s patient.

A year after helping to increase awareness for Sjogren’s when she publicly announced her diagnosis, Venus once again stood up for Sjögren’s awareness when she carried the Olympic torch through the streets of London on, what more appropriate day, World Sjögren’s Day. (July 23rd)

Here is an excerpt from her Facebook page:

Venus“Today was an amazing day. I carried the Olympic flame right through Wimbledon! I truly felt the Olympic spirit, participation, giving your best and bringing people together no matter what their background of differences. This Olympics is very special to me having battled through an auto immune disease in the last year. It was my dream come true to qualify for the Olympics. To carry the torch today on World Sjögren’s day was so fitting. My run with the flame today represented triumph for everyone battling an auto immune disease. I'm planning on enjoying every day at the Olympics, I won't take even one for granted!”

As you know, World Sjögren’s Day commemorates the birthday of Henrik Sjögren, who first identified Sjögren’s in 1933. This past summer, we asked members and supporters to use World Sjögren’s Day as a reason to talk about Sjögren’s. Initially, sharing can be a scary thought but you will never know what support is out there if you don’t. Awareness can be reached one person at a time and we encourage everyone to find reasons in your own life to talk about Sjögren’s.

Venus went on to win the Women’s Doubles Olympic Tennis Gold Medal with her sister, Serena Williams. The Foundation wants to not only thank Venus for stepping up for Sjögren’s awareness but also for being inspiration to all Sjögren’s patients.

Topics: World Sjogren's Day, Sjogren's, Venus Williams

World Sjogren's Day - July 23

Posted on Tue, Jul 17, 2012

describe the image

On July 23rd, the Sjogren's Syndrome Foundation will join with other Sjogren's groups around the world to celebrate World Sjogren's Day.

World Sjogren's Day commemorates the birthday of Henrik Sjogren, who first identified this disease in 1933, while bringing organizations across the world together to raise awareness about Sjogren’s.

This year, the Foundation is hoping to raise $10,000 for research in honor of Dr. Sjogren's 113th birthday. Click Here to make a donation towards research to celebrate World Sjogren's Day. You can also set up your own FirstGiving page and ask friends and family to donate to the SSF in honor of Henrik Sjogren and World Sjogren's Day!

World Sjogren's Day creates a wonderful opportunity for you to talk about Sjogren's with the people in your life. While sharing can be a scary thought initially, you'll never know what support is out there or who may also be dealing with the same issues you were before your diagnosis. By sharing, you may help someone get diagnosed quicker but most importantly, you will be helping to make Sjogren’s a household name. 

Write a comment below and let us know what you did for World Sjogren’s Day or what it was like to talk to someone in your life about Sjogren’s. Together we can conquer Sjogren's! 


Topics: World Sjogren's Day, Sjogren's

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