September 1, 2011

And Now a Word From the Sjogren's Syndrome Foundation

In reaction to the news that broke yesterday when Venus Williams revealed her recent diagnosis with Sjogren's Syndrome, the SSF issued a press release for immediate distribution.  Naturally I'll be sending this to all local outlets, but I also thought I should share it with you.  I'll have to write a separate post regarding my reaction to the news (and news outlets' coverage thereof), but for now please enjoy and share the reaction of the Sjogren's Syndrome Foundation!

And after that, read this article on Tennis Grandstand - it's by FAR the most accurate article yet!

Sjögren’s Syndrome Foundation Supports Venus Williams

Photo found here.

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.*
(Jen's Note: this statement is referring to the Sjogren's Awareness Ambassadors, of which I am one, so please feel free to contact me or the Foundation if we can speak to someone from your organization!)

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