Tuesday, January 31, 2012

SSF Breakthrough Goal: Decrease Time To Diagnosis by Fifty Percent!

The January 2012 issue of The Moisture Seekers Newsletter published by the Sjogren's Syndrome Foundation contains the newest goal for the SSF: To shorten the time to diagnose Sjogren's by 50% in five years. Currently, the average time from symptoms to diagnosis for many sjoggies is five years - and many much longer.

Needless to day, this is an excellent goal. This from Steven Taylor, SSF CEO:
"We cannot sit on the sidelines and let these patients suffer any longer. That is why the SSF Board of Directors is taking action to ensure we do everything we can to increase awareness and to help those patients yet to be diagnosed." 
The Foundation plans to reach this goal by following three plans of action:

  • Increasing public awareness
  • Increasing involvement from our friends and partners
  • Increasing education and awareness among healthcare professionals

One way that all sjoggies can do their part in helping the foundation reach this important goal is to join the Sjogren's Syndrome Foundation. Your membership will help fund research, patient and professional educational events and materials, and help to increase global awareness of this disease. And as a member, you will have access to this wealth of information AND receive the Moisture Seekers Newsletter delivered to your home. Members of the SSF who are interested and motivated to help tackle public awareness are encouraged to be part of the Awareness Ambassador program, which is an impressive plan that arms sjoggies with the training, support, and materials needed to contact the media, speak to physicians, and distribute information to clinics and offices.

This issue of the Moisture Seekers also includes a physician perspective from Nancy Carterton, MD, FACR, rheumatologist and co-author of the excellent book and Sjogren's syndrome resource A Body Out of Balance - Understanding and Treating Sjogren's Syndrome.
"Sjogren's patients should not have to suffer any longer from the lack of physician awareness and education. When I see someone who has not been able to obtain a diagnosis for a long time, I face a much tougher job helping that patient.........we as physicians suffer as well when we cannot diagnose a patient." 
Well said.

I wonder how many lives would have been extraordinarily different had a diagnosis been made and treatment begun two and one half years sooner than the typical five? How many symptoms and long term problems could have been avoided? How quality of life for those patients would have been changed?

Even if you choose not to become a member, the Sjogren's Syndrome Foundation website has great information and resources available to everyone, as well as a list of upcoming patient seminars and fundraising opportunities. I'm always intrigued when I see the Sip For Sjogren's - A Fine Water Tasting Event. What a great concept! Who needs a wine tasting evening? What fun to taste specialty waters bottled from all over the world, and support an amazing cause in the process. The SSF also organizes walking events titled Sjogren's Walkabouts:

It's more than a walk. The Sjögren’s Walkabout is a national awareness and fundraising event. 
The event focuses on increasing community awareness of Sjögren’s syndrome as well as promoting a healthy and active lifestyle. Participants raise funds to support research and education programs offered by the Sjögren’s Syndrome Foundation.  
Everyone is encouraged to participate whether you come to an event to walk or to meet other fellow Sjögren’s supporters and cheer on the participants. Your attendance is important to show that Sjögren’s affects many.  
Together we will conquer this disease.

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