In January 2012 the Sjögren’s Foundation embarked on our 5-Year Breakthrough Goal: “To shorten the time to diagnose Sjögren’s by 50% in five years!”
When the Sjögren’s Foundation first launched our goal, the average time it took for a patient to be accurately diagnosed with Sjögren’s, from the time they started seeking a diagnosis, was nearly six years. This was something we all agreed was too long, and meant that to achieve our Goal we would need to shorten the diagnosis time to less than three years.
In 2018, the Sjögren’s Foundation 5-Year Breakthrough Goal had the honor to announce that we had not only reached our Goal but had surpassed it, reporting that the average diagnosis time was 2.8 years!
When we first embarked on our Goal, we understood that changing the diagnosis time was an ambitious initiative and one that we might not succeed at, but we also knew it was an important initiative to help the millions of patients who were suffering from the symptoms and not yet diagnosed with the disease. We believed that our Goal would transform the disease because as physicians start seeing more Sjögren’s patients in their practices, they would need to become more knowledgeable of the disease’s different manifestations and the treatment options available.
Diagnosing a patient quickly can be a challenge because often a patient will discuss tooth decay with their dentist, vaginal dryness with their gynecologist and fatigue or joint paint with their primary care doctor. While each symptom alone wouldn’t indicate an underlining autoimmune disease, when coupled together they would suggest Sjögren’s. It is still our hope to have Sjögren’s at the top of physician’s minds when they hear a patient complaining of dry mouth, dry eye, fatigue, or joint pain because no patient should have to suffer from the lack of a physician’s awareness and education. This is why our awareness efforts continue to work on educating all specialties within the medical community, as well as encourage the general public to be their own health advocates by knowing the symptoms of Sjögren’s.
An early diagnosis and proper treatment are important for preventing serious complications and greatly improve a patient’s quality of life. Without appropriate treatment, patients may develop serious consequences such as corneal scarring, loss of teeth, internal organ involvement, misdiagnosed neuropathy pain, profound fatigue, or chronic upper respiratory problems. Systemic issues could also be caught earlier and mitigated. We know many Foundation members could have benefited if a physician had only considered Sjögren’s earlier on and helped them receive a proper diagnosis. And as difficult as the physical symptoms can be, we at the Foundation are aware of how devastating the emotional repercussions of having a misdiagnosed or undiagnosed disease can be. Over the years, patients would often tell us about their daily struggle with worrying about what was wrong with them before they were diagnosed and the validation they eventually felt when knowing there was an explication for their symptoms.
Thank you to everyone who helped us accomplish this momentous Goal! We know our work is far from over, but we have also seen what we are able to accomplish together! We are seeing the disease being taken more seriously in the medical community. The Foundation will continue building on our work to ensure Sjögren’s is not forgotten in the research, pharmaceutical or physician communities. We are committed to accelerating the development of better diagnostic, management and therapeutics that will have the greatest potential impact on improving the quality of life for Sjögren’s patients.
If you would like to learn more or have any questions about Foundation programs and initiatives, please do not hesitate to contact us at info [at] sjogrens [dot] org (info[at]sjogrens[dot]org). Together, we will conquer the complexities of Sjögren’s.