Sjögren’s disease is difficult to diagnose! Nearly half of all patients are considered especially difficult to diagnose even though symptoms clearly point to Sjögren’s. Currently, we have only two options available to healthcare providers (HCPs) to clearly diagnose Sjögren’s: testing positive on a lip biopsy and testing positive for a prominent autoantibody associated with Sjögren’s known as anti-SSA (also called anti-Ro).
Some patients don’t have access to or choose not to get a lip biopsy or had a biopsy that wasn’t definitive for diagnosis. Up to 40% of patients are not positive for anti-SSA and are seen as “seronegative,” making diagnosis harder. Some don’t have obvious symptoms of dryness, a key indicator of Sjögren’s, but present with symptoms that doctors don’t realize are associated with the disease. Some doctors mistakenly believe a patient has to meet the very strict criteria designed for use in clinical trials to be diagnosed with Sjögren’s. All of these circumstances make diagnosis more difficult. And all patients, whether “seropositive” or “seronegative”, are at risk for serious disease and deserve quality care!
As we wait for researchers to discover new biomarkers that offer healthcare providers more diagnostic options, we need to come together and continue our efforts to shed light on this issue. This is why the Sjögren’s Foundation has worked so long and hard on diagnosis and is grateful to our highly engaged members who join their voices with ours to make an impact. Patients can help spread the word with all of their doctors that 30-40% of patients are not positive for anti-SSA and remind them that Sjögren’s has a wide array of symptoms. If you are seronegative, share your stories with us by submitting to our Patient-to-Patient program on our website at https://sjogrens.org/living-with-sjogrens/patient-to-patient-stories.
The Sjögren’s Foundation has been highlighting this issue for years with researchers, government agencies, HCPs, and more recently, through provider education programs. We have a small staff of thirteen people, but we are passionate about what we do for patients and are making change happen!
Here are just a few of the ways the Sjögren’s Foundation is driving change followed by ways you can join us to help make change.
The Foundation is focused on:
Increasing professional education and awareness by -
- Offering continuing education courses and partnering with entities who can reach wide audiences in family and rheumatology practices.
- Developing and disseminating clinical practice guidelines so professionals can better identify disease complications and adopt expert management and treatment tools.
- Participating in professional conferences – Just in the past year, we took part in meetings for rheumatologists, autonomic nervous system specialists, general neurologists, pulmonologists, nurse practitioners, and rheumatology nurses.
- Partnering with professional societies to distribute up-to-date information on Sjögren’s and offer educational programs to their members on Sjögren’s.
- Designing online training programs to increase professionals’ knowledge.
- Holding an annual State of Sjögren’s program for all healthcare providers and their teams to hear from Sjögren’s experts and gain an understanding of the need for collaborative care. In fact, our next State of Sjögren’s does focus on the difficult-to-diagnose patient!
Funding and supporting research by-
- Funding innovative and quality basic and clinical research to identify better ways to diagnose, manage, and treat this disease.
- Advocating for awareness and funding on Capitol Hill.
- Developing key relationships at the National Institutes of Health, which is the largest funder of medical and scientific research in the world, and other federal agencies that can make a difference in the lives of those with Sjögren’s.
- Ensuring we take a lead role in collaborative research efforts, such as our leadership with the Foundation for the National Institutes of Health (FNIH) Sjögren’s Biomarkers Consortium and the FNIH Accelerating Medicines Partnership® (AMP®) - Autoimmune and Immune-Mediated Diseases (AMP AIM) program that is comparing Sjögren’s, lupus, rheumatoid arthritis, and psoriasis and psoriatic arthritis at the most basic, cellular level. In fact, our AMP AIM involvement does include work with seronegative patients.
- Serving on commissions and committees at the federal level and other entities that set research and policy agendas that will affect patients’ lives.
Expanding interest on the part of pharma and biotech companies by -
- Developing and building on corporate relationships that can make a difference in Sjögren’s.
- Providing the patient voice in our work in the clinical trials space, including our work with the Food and Drug Administration (FDA).
- Advocating for inclusion of seronegative patients in clinical trials and succeeding with this for an upcoming trial.
Raising greater awareness among the public by -
- Reaching out to the public at-large via mass media and communication avenues so people will consider Sjögren’s symptoms, pursue a diagnosis, and recognize the disease as a potential diagnosis in others.
- Partnering with health coalitions and patient groups to tap into a broader network to get the word out about our disease.
- Raising awareness on Capitol Hill so that when broad support for Sjögren’s is obtained we can develop legislation targeted to helping Sjögren’s patients.
Using what we have learned about our patients through our latest National Patient Survey to accomplish all of the above.
Here are some ways that YOU can join the fight to make Sjögren’s better known and understood!
- Tell your story by submitting to the Patient-to-Patient program. We highlight people on our website, and we take these stories to professional conferences.
- Become a Sjögren’s Foundation Awareness Ambassador.
- Respond to our pleas to advocate for opportunities that can help patients, such as requests to contact legislators about our new Resolution and the potential for dental coverage under Medicare.
- Join or lead Foundation walks and other fundraising and awareness events.
- Share Sjögren’s Foundation information, such as Clinical Practice Guidelines, to your healthcare providers.
- Direct your healthcare providers to the Foundation to access guidelines, download resource sheets, sign up for Sjögren’s Quarterly, and learn about our continuing education and other educational opportunities.
- Lead a Support Group or become a patient support volunteer.
- Donate to the Foundation so we can increase funding for research and hire staff to accomplish even more.
We know that when we are living with this devastating disease, change can never come quickly enough. We know that patients are not always alike and are often misunderstood, misdiagnosed or not diagnosed, and do not always receive good care. No one knows this more than our patients and our Foundation staff members, some of whom live with the difficult consequences of this disease themselves. Foundation staff talk to hundreds of patients every week and hear their stories!
There IS hope on the horizon with important research taking place – research sparked by the Foundation on the home front and internationally to identify better diagnostic and management tools. Discoveries by former Foundation research grantees are coming to fruition, such as the discovery of salivary biomarkers that can identify anti-SSA/Ro when negative in the blood and the recent discovery of new potential biomarkers to identify seronegative patients. We are excited about the many possibilities we see coming along in research and hope you are, too!
Together, we will stand up for those who have our disease to ensure a better future for all of us!
Together, we will conquer the complexities of Sjögren’s!