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

Breaking the Barriers: 4.7

Posted on Fri, Nov 23, 2012

describe the imageThe Sjögren’s Syndrome Foundation’s 5-Year Breakthrough Goal:“To shorten the time to diagnose Sjögren’s by 50% in 5 years,” is the largest initiative that the SSF has ever undertaken. This is why we are working with an outside marketing research firm to help us gather information needed to reach our goal, track our progress and tell us how long it currently is taking patients to be diagnosed with Sjögren’s.

This summer, the SSF and our marketing research firm surveyed newly diagnosed Sjögren’s patients from 2011, and of those patients surveyed, it was determined that it currently takes patients on average 4.7 years to be diagnosed with Sjögren’s. While 4.7 years is a great initial improvement from all past studies, we probably all can agree that it is still too long to wait for an accurate diagnosis!

In addition to the length of time to reach diagnosis, the SSF also was able to gather valuable data about the average age of those being diagnosed, which medical professionals are diagnosing Sjögren’s, which symptoms are causing patients to seek a diagnosis and what symptoms patients are currently experiencing. This new information will help the SSF in highlighting gaps in patients’ medical care as well as where we may be able to capture potential patients before they suffer for nearly 5 years. We then can direct our marketing efforts toward those symptoms and medical professionals.

So, now, the SSF can be proud that we have been able to decrease the time for diagnosis from nearly 8 years back in 2007 to now 4.7 years. This baseline will give us our starting point to reach our goal of shortening the time to diagnose Sjögren’s by 50% over the next 5 years. We hope that by 2017, we can say that it only takes a little over 2 years to obtain a proper diagnosis!

We can do this – but we still need more help! We thank those who have been participating in our awareness initiatives and coming out to fundraising events as well as those who support the SSF. However, there are more ways to get connected and we hope you will all step up and help us. Learn more about the SSF and how you can assist us by visiting or calling the SSF office at 800-475-6473.

*** This was first published in the October issue of The Moisture Seekers, our patient newsletter for SSF members.

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Topics: Diagnosing Sjogren's, Symptoms, Sjogren's

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