SSF 5-Year Breakthrough Goal:     
2 Year Update

(Article from The Moisture Seekers January 2014, SSF Members can use this link to log-in and read the full Issue)  

Two years ago the Sjögren’s Syndrome Foundation and Board of Directors had the privilege of announcing the launch of our 5-Year Breakthrough Goal in the January 2012 issue of The Moisture Seekers.

Our Goal: “To shorten the time to diagnose Sjögren’s by 50% in five years!”

It currently takes an average 4.7 years to receive an accurate diagnosis from the time a patient seeks treatment for their symptoms to formal diagnosis.  This is why that SSF knew that we had to take action and ensure that those seeking a diagnosis would not have to struggle for as long as those who went before them.

Having patients diagnosed faster will also benefit all Sjögren’s sufferers. As physicians start seeing more patients in their practice, they will need to become more knowledgeable about the different manifestations of Sjögren’s and the treatment options available.

To achieve our 5-Year Breakthrough Goal and shorten the time it takes to be diagnosed to less than 2.5 years by 2017, we are focusing on three specific action items:

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

Increasing public awareness
With the help from our volunteer Awareness Ambassadors this past year, we are slowly achieving our hope to make Sjögren’s a household name. These Ambassadors are searving on the front lines by helping to distribute Sjögren’s educational information throughout their local communities as well as helping to educate their area’s physicians.

As our Honorary Awareness Ambassador Chairperson, Venus Williams (Olympian and Pro-Tennis Player) leads the charge, we are proud to announce that we currently have 472 Ambassadors representing 46 states. These volunteers have stepped up to be a part of our our Carroll Petrie Foundation Sjögren’s Awareness Ambassador Program and since the launch of our 5-Year Breakthrough Goal they have distributed over 27,000 Sjögren’s kits to over 2,567 healthcare professionals in their local communities.

As you know, Sjögren’s can often be overlooked or misdiagnosed because it can affect the entire body and patient’s symptoms can manifest in various ways.  We also know that diagnosing a patient quickly can be a challenge because often a patient will discuss dry mouth or tooth decay with their dentist, dry eye with their eye care provider, vaginal dryness with their gynecologist, and fatigue or joint paint with their primary care doctor.  Each symptom alone wouldn’t indicate an underlining autoimmune disease but when coupled together, would suggest Sjögren’s. That is why part of our program is trying to educate the general community that any time they suffer from symptoms of any sort, to make sure they are telling one physician all of their symptoms.  This will not only help in diagnosing Sjögren’s but also any other underlining condition.

This past year, the SSF has also expanded the use of our new blog “Conquering Sjögren’s” as a way to educate and increase awareness for both diagnosed and undiagnosed patients. Social media including Facebook and Twitter has also helped the SSF to make Sjögren’s information easily accessible to the general public so that when someone undiagnosed searches about their symptoms online, they will find the SSF. Our hope is that our online information will encourage these patients to talk to their doctor about the possibility of a Sjögren’s diagnosis.

While our presence on social media is a tool to get Sjögren’s information out to the masses, we encourage everyone to use these online outlets as a way to connect with other patients, share their Sjögren’s story, and see the new information that’s available to everyone on sjogrens.org.

Increasing involvement from our friends and partners
This is a critical aspect to achieving our 5-Year Breakthrough Goal.  The SSF strongly values our partnerships with other autoimmune disease organizations, especially those that regularly coincide with Sjögren’s.  We are proud to be in various coalitions with them to help advocate on Capitol Hill as we did with the Restoring Access to Medication Act (S. 1647), bipartisan legislation which was recently introduced to the Senate in November 2013.  This work was the continuation of SSF CEO Steve Taylor’s testimony before the House Committee on Ways and Means about the expense and difficulty with treating Sjögren’s with over-the-counter medication. Joining our voices together in one unified voice has helped make the SSF effective in changing the way Sjögren’s is viewed.

As you have seen in past issues of The Moisture Seekers, we continually ask our contacts, friends and their families to help us spread the word by participating in awareness events and other activities. Our Sjögren’s Walkabouts, Sip for Sjögren’s and our Team Sjögren’s events allow patients to connect in a casual and fun environment that also increases awareness in their community and  raises funds for Sjögren’s. You can check this issue to see a calendar of upcoming SSF events this spring and summer.  By participating and/or attending our events, you will not only be supporting the SSF but you will also showing your support of the Sjögren’s patients who helped to organize these events.  In addition, the more in attendance, the more potential to create awareness at the various venues where these events are held.

And finally the SSF has worked hard at creating partnership with corporations and private foundations to create awareness programs for Sjögren’s.  The SSF’s national partnership with Tupperware® this year has helped us increase awareness and expand our efforts of partnering with companies that can help spread the word about Sjögren’s.  In addition, the Carroll Petrie Foundation also has considerably helped the SSF by supporting the SSF’s Awareness Ambassador Program.  Many other partnerships were formed and we encourage you to watch future newsletter for information about new therapeutic clinical trials that will be launching in 2014 as well as new diagnostic testing that is being used to help us speed up the diagnosis for Sjögren’s!

Increasing education and awareness among healthcare professionals

Increasing professional awareness is a very important facet of the SSF’s mission and overall strategy to achieving our Goal. Professional awareness and education will not only help speed up a diagnosis but will also help physicians understand the severity of the disease and how best to treat Sjögren’s patients.  That is why nearly 4 years ago the SSF embarked on our largest professional initiative ever – to develop clinical practice guidelines for Sjögren’s.

Clinical practice guidelines will give physicians a road map of how to treat, monitor and manage their Sjögren’s patients to help standardize patient care. To date, over a 100 healthcare professionals have volunteered their time to help with our ongoing guidelines that have already received praise from the American College of Rheumatology, the American Dental Association and the American Academy of Ophthalmology.

Having healthcare professionals fully understand Sjögren’s is something that all patients know is urgently needed.  This is why professional education is a top priority.  The Foundation continues to work on increasing our visibility at healthcare professional conferences – especially those specialties that see symptoms long before patients are diagnosed. This past year the SSF was proud to present and exhibit at numerous professional conferences such as:

  • American College of Rheumatology (ACR)
  • Friends of National Institute of Dental and Craniofacial Research (FNIDCR)
  • Yankee Dental
  • American Academy of Oral Medicine (AAOM)
  • American Optometric Association (AOA)


Summary
As you can see, the SSF has kept the momentum alive this past year as we strive to reach our 5-Year Breakthrough Goal.  Thank you to everyone who has helped us along our way!  From our Awareness Ambassadors to our Support Group Leaders, and our professional educators to our event volunteers- the Board of Directors and the staff of the SSF are humbled by your support.

We know however that the dream of making Sjögren’s a household name is only possible if everyone will step up and do something! We encourage you to look for opportunities in this and future issues of the newsletter for ways to connect with the Foundation.  And remember to share your Sjögren’s story and tell others about the SSF.

Remember that one person at a time, one community at a time and one physician at a time makes all the difference and when all put together – we will conquer Sjögren’s!