Venus Williams gave an exclusive interview with Good Morning America on September 1, 2011 focusing on her Sjögren's diagnosis.

Click Here to watch a video of the interview with Good Morning America.  

 

 

When a person is diagnosed with Sjögren’s syndrome, they often don't know where to begin.

This program will introduce you to three Sjögren’s patients who will share their journey with you. In addition, you will hear from Sjögren’s experts about the causes, treatments and manifestations of Sjögren’s. From there, we hope you will have a place to begin as you develop a partnership and treatment plan with your physician.

Click Here to View the Video 

Medical professionals can be provided a supply of DVDs to give out free-of-charge to their patients. Contact the Sjögren’s Syndrome Foundation office at 800-475-6473 to learn more.

 

Join the SSF today and receive these great membership benefits (and much more)!

 

  • The Moisture Seekers newsletter: This monthly print newsletter contains the latest information on Sjögren's, practical tips for daily living, and answers to medical questions from the experts. Curious what The Moisture Seekers looks like? View an electronic sample of the newsletter by downloading it here.
  • Exclusive access to the members-only section of sjogrens.org, featuring resources unavailable to other site visitors such as archives of the most popular newsletter articles, our online product guide and access to our online community.

  • Members-only discounts on a variety of products and services such as The Sjögren's Syndrome Handbook and SSF National Patient Conferences.

  • Providing the Foundation with one more voice to increase awareness, educate others, and encourage research – all of which help in the fight to conquer Sjögren's!
     

 

If you have any questions or want to contact the Foundation, please call us at 1-800-475-6473. Remember, you are not alone. The Sjögren’s Syndrome Foundation staff and volunteers are working on your behalf to conquer Sjögren’s.

Click Here for a Copy of Our Press Release

 

FOR IMMEDIATE RELEASE 

Contact Information:
Elizabeth Trocchio or Steven Taylor
Sjögren's Syndrome Foundation
Direct Line: 301-530-4420, press 0
Fax: 301-530-4415
Email: staylor@sjogrens.org
Website: www.sjogrens.org 

 

Sjögren’s Syndrome Foundation Supports Venus Williams 

The Sjögren's Syndrome Foundation (SSF) was saddened to hear about Venus Williams’ diagnosis of Sjögren’s syndrome and supports her courageous decision to step forward and share her diagnosis.

Steven Taylor, CEO of the Sjögren’s Syndrome Foundation, states that “on behalf of the 4 million Americans with Sjögren’s, we applaud Venus for publicly stepping forward and shedding light on this serious autoimmune disease. Her courage gives hope to the many who live silently with Sjögren’s because of the lack of awareness around this disease.” 

Although not always life-threatening, Sjögren’s can cause debilitating and life-long complications and have a profound affect on one’s quality of life. At the same time, many Sjögren’s patients fortunately live healthy and productive lives free of major complications.

Sjögren’s syndrome is the second most common autoimmune rheumatic disease and 3x more common than better known related diseases such as Lupus and Multiple Sclerosis.   The disease affects the moisture-producing glands which can cause dry mouth and dry eye.  In addition, fatigue, muscle pain and joint pain are prominent symptoms while serious manifestations can occur with life-threatening lung involvement, central nervous system complications and cognitive functioning.

As Venus stated, she “is thankful to finally have a diagnosis,” and the Sjögren’s Syndrome Foundation is glad that she now has peace in knowing what was causing her symptoms. Unfortunately, many Sjögren’s patients face the same struggle with trying to get a diagnosis that, on average, takes 6.5 years. The Sjögren’s Syndrome Foundation is launching a major new initiative this fall aimed at reducing the time from onset of symptoms to obtaining a diagnosis.

This October, the Sjögren’s Syndrome Foundation will formally announce plans to achieve a new breakthrough goal of “shortening the time from the onset of symptoms to a Sjögren’s diagnosis by 50% over the next 5 years.” The SSF will be introducing national initiatives and programs to help educate the general public and healthcare professionals. Steven Taylor, CEO of the Foundation said, “We hope Venus will consider helping us with this bold initiative, as it will take many to make this goal a reality.”

 **Arrangements can be made for interviews with local Sjögren's patients, healthcare professionals as well as Steven Taylor, CEO, of the Sjögren’s Syndrome Foundation.* 

6707 Democracy Boulevard, Suite 325 ~ Bethesda, MD 20817 ~ 301-530-4420 ~
FAX 301-530-4415
www.sjogrens.org ~ email ssf@sjogrens.org

The Foundation is honored to have Katie, the daughter of a Sjögren's patient, create an informational video on Sjögren's as a student project.

Katie attended our National Patient Conference, Greater Washington Region Walkabout, and Philadelphia Sjögren's Walkabout to learn more. Thanks all who participated and helped Katie to create such an informative and interesting video on Sjögren's.

Click Here to view the video.