The 9th Annual National Conference of the Sjogren's Society of Canada was held on May 2 at the Delta Armouries Hotel in London, Ontario. The theme this year was "Empower Yourself" By exploring current findings in Sjogren's Syndrome, along with the "elephants in the room" patients should be able to manage their symptoms better.
There is now a great deal of evidence that suggests that patient knowledge, skill and confidence with managing chronic disease helps us to have better outcomes. We must pilot our own planes because we're the only ones dealing with our Sjogren's full time. Health care professionals only check in to help us a few hours a year. That's another reason that learning more and talking to peers at the conference is such a benefit.
Plane model of Self-management - you're the pilot
As in the past, Health care professionals who attended were eligible for continuing education credits.
After an introduction by President and Founder Lee Durdon, Dr. Arthur Bookman, the co-ordinator of the Multidisciplinary Sjogren's Clinic at Toronto Western Hospital and co-chair of the Sjogren's Canada Medical Advisory Board opened up the program with "An Overview of Sjogren's Syndrome." He told us how Sjogren's is diagnosed, the major manifestations and the impact it has on a patient's quality of life, as well as some new knowledge he has learned through studying Sjogren's patients.
There's a lot that goes into diagnosing Sjogren's Syndrome. These are the American-European Consensus Criteria.
1. Have you had daily persistent dry eye for more than 3 months?
2. Do you have a recurrent sensation of sand or gravel in the eye?
1. Have you had a feeling of dry mouth for more than 3 months?
2. Have you had recurrently or persistently swollen salivary glands as an adult?
3. Do you frequently drink liquids to aid in swallowing dry food (the cracker sign)?
1. Schirmer's test
2. Rose bengal score or other dry eye score
Salivary gland biopsy
Salivary gland involvement: At least 1 is positive.
1. Unstimulated whole salivary flow (1.5 ml in 15 minutes)
2. Parotid sialography
3 Salivary scintigraphy
Blood test for antibodies to Ro(SSA) or La(SSB)
As you see some of these are questions asked of the patient (subjective) and some are determined by testing (objective) so there are two elements to the diagnosis. You need to have 4 of the 6 criteria or else an abnormal biopsy for a diagnosis.
For the unstimulated salivary flow the patients spends 15 minutes spitting into a flask. 2 to 4 cc is normal. With Sjogren's it's usually only 1 1/2 cc.
Many patients are less than happy with Doctors because it usually takes at least 3 years and as many as 3 doctors before getting a diagnosis of Sjogren's. Dryness of the mucous membranes is a hallmark of Sjogren's Syndrome - that takes in all of them, even beyond mouth and eyes, to include ears, nose and vaginal tissues.
Fortunately Dr Bookman had encouraging news about the possibilities of Rituxan and other new research.
He also reminded us that a first order of advocacy would be to work on both insurance companies and on the government for a more favourable treatment of damage to the teeth caused by Sjogren's Syndrome.