It’s happening..Sjogren’s Syndrome is gaining more attention from the medical community with significant research to support it. It is well known by individuals within the Sjogren’s patient community and the Sjogren’s Doctors who treat them, that Sjogren’s Syndrome is not well understood by most everyone else. That is, most doctors had the basic review of Sjogren’s in Med School, and typically look no further (if it occurs to them to connect all of the disjointed and confusing patient symptoms at all) beyond the hallmark dry eyes and dry mouth symptoms of Sjogren’s.
In 2014, the first portion of Clinical Guidelines for Sjogren’s Syndrome will become available. Among the first sections being developed to help physicians in diagnosing and treating Sjogren’s Syndrome are:
- The Rheumatology/Systemic Manifestations of Sjogren’s Syndrome
- The Oral Manifestations
- Ocular Management of Sjogren’s Symptoms
In addition to developing Clinical Guidelines, it is a very exciting time for Sjogren’s Syndrome research both in the United States and Internationally. Finally, physicians, scientists and researchers are starting to discover that there is more to Sjogren’s than what meets the “dry eye”.
An international coalition of researchers led by scientists recently identified six new Sjogren’s genes. What has always posed a problem in diagnosing Sjogren’s Syndrome, is the difficulty in identifying true Sjogren’s patients and collecting enough samples, partly because there’s still disagreement on the criteria for the disease and clinical testing is not easy. By identifying six new genes, the hope is that the discoveries will open the door for researchers to find therapeutics that work at the genetic level to stop the disease.
In addition to the above new research, I came across a study that was recently published as an abstract & presented at the annual meeting of the American College of Rheumatology by Dr. Alan Baer of Johns Hopkins. Dr. Baer reported the following information. Currently, the ACR classification of Sjogren’s Syndrome require at least two of these three criteria:
- Positive serum anti-SSA and/or anti-SSB, or rheumatoid factor and an antinuclear antibody titer of 1:320 or higher
- Labial salivary gland biopsy exhibiting focal lymphocytic sialadenitis (inflammation of the salivary gland) with a focus score of 1 focus/4 mm^2
- Keratoconjunctivitis sicca (dry eyes) with ocular staining score of 3 or higher
The above criteria demonstrate how important anti-SSA and/or SSB are. However, these antibodies alone do not account for all cases of Sjogren’s Syndrome, and the presence of anti-CCP and anti-centromere autoantibodies may account for some cases of Sjogren’s Syndrome in patients seronegative for anti-SSA and anti-SSB. The presence of additional antibodies such as anti-CCP and anti-centromere may also define a group of Sjogren’s patients with overlap features of additional autoimmune conditions who do not meet the full criteria for these other diseases. Exploring alternative autoantibodies associated with Sjogren’s Syndrome and refining the standards by which lip biopsies are interpreted will improve the ability of physicians to identify and define this condition, Baer observed. He further stated, ” I think when we start to be more exacting in how lip biopsies are read and defining other markers for the underlying autoimmune disease, the phenotype (observable characteristics) of Sjogren’s Syndrome may not prove to be as heterogeneous as it is at present”.
So there you have it, an explosion of new and potentially life-changing research that will..in time, make undiagnosed, semi-diagnosed and diagnosed Sjogren’s patient’s journeys easier. For those of you who have spent years living the chronic illness life with so many unanswered questions, there is hope on the horizon.