Empower Yourself: 9th Annual Sjogren's Conference. Overview by Dr Bookman

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.

Ocular symptoms:

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?

3. Do you use tear substitutes more than 3x per day?

Oral Symptoms:

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)?

Ocular Signs:

1. Schirmer's test

2. Rose bengal score or other dry eye score

Histopathology:

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

Autoantibodies:

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. 

Empower Yourself at the 9th Annual Sjogren's Conference!!

It's spring almost everywhere and time for the National Conference held by the Sjogren's Society of Canada.  "Empower Yourself" is the name of the conference. We'll be exploring current findings along with the "elephants in the room" to help you manage better. Presentations on new topics of Fatigue and Intimacy and Sexuality in Sjogren's will be discussed. 

Our Spring Crocuses are not up yet.

There is a great deal of evidence that suggests that patient knowledge, skill and confidence with managing chronic disease is a good indicator of better outcomes.

Lately I've seen Sjogren's Syndrome spelled many different ways: Sourjons, Soujgrens,Sjorgen's and Sojourns, all by different people who suspected this was a diagnosis that they would be adding to their other autoimmune disease(s). You can only imagine how difficult their searches for accurate information are going to be.

The upcoming National Sjogren's Conference will be a great way for both patients and health care professionals to learn more reliable facts. All you need to do to attend is register and come to the Delta London Armouries Hotel in London, Ontario on May 2. Health care professionals who attend are eligible for continuing education credits.



I am planning to take notes and post what I learn as I have in the past. Our conference has a distinctive special feature. For one hour the speakers and other volunteer heath professionals from Sjogren's related fields will host round table talks where attendees have a chance to ask personally relevant questions.  It's great to have that opportunity and also interesting to hear about the problems others face. Sometimes they match your problems.

Here's a quick overview of the speakers and their topics.

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 will start the program with "An Overview of Sjogren's Syndrome." He will tell us how it is diagnosed, the major manifestations and the impact it has on a patient's quality of life.

The next presentation is from Dr. Rookya Mather. She is the Associate Professor of Ophthalmology at the Ivey Eye Institute at Western University. Her topic is Understanding and Managing Dry Eye Disease and she'll be helping us to understand Dry Eye and how this affects those who live with it and have to manage it every day. Many of her patients have complex ocular surface problems.

We are excited to see Dr. Ava Wu at our conference for the first time ever. She is a Professor and researcher in the Department of Orofacial Services and has seen thousands of patients at the Sjogren's Clinic at the University of California, San Francisco where she is the Director.   Lately, she is also the co-author (with Dr. Troy E. Daniels, DDS, MS) of Chapter 16, "The Dry Mouth" in the newest "The Sjogren's Book" - Fourth Edition.  She sees patients as part of the International Sjogren's Syndrome Registry (International Collaborative Clinical Alliance (SICCA))

This year Dr. Arthur Bookman has added a new topic - "Fatigue and Sjogren's Syndrome"  This is one of the most disabling features of Sjogren's Syndrome" He will explore the possible causes, ways to minimize fatigue and promising new medications.

In comments made over the years members have indicated a wish to hear more about one of those topics that is usually kept in the closet. I have brought it up a few times but most Doctors seem to be uncomfortable with it and do not offer much advice. Since intimacy and all it implies is so crucial to maintaining relationships we will be happy to hear Iris Zink, a Rheumatology Nurse Practitioner and President Elect of the of the Rheumatology Nurses Society speak on the topic of "Intimacy, Sexuality and Sjogrens's Syndrome."

"What's New In Dry Eye Products?" This talk by C. Lisa Prokopich, OD, MSc, Optometrist and Head of the Ocular Health Clinic at the University of Waterloo School of Optometry and Vision Science will inform the audience of recent advances in pharmaceuticals and products to treat dry eye.

Glad to say my eye is never this red

After we hear from Dr. Prokopich the round table discussions occur. 

Our next speaker is Dr. Rami Abo-Shasha. His topic is "Corneal Neuralgia in Sjogren's Syndrome, A Brief Overview." I think we will all learn something new from Dr. Abo-Shasha. This is a problem that I was not previously aware of despite years with Sjogren's. It was also daunting to learn that this is not easily recognized by many doctors, so patients can spend a lot of time looking for a diagnosis.

Dryness of the mucous membranes is a hallmark of Sjogren's Syndrome

The final speaker of the day is Dr. Leslie Laing, "Saying "Treats" and Other Mouth-Watering Suggestions" who will discuss research findings on the oral aspects of Sjogren's including these areas: oroofacial altered sensation; the effects of the disorder on the quality of life; the outcome of usage of various oral moisturizers and non traditional products such as green tea, licorice root, xylitol,and virgin coconut oil. 

This is the 9th Annual Conference and is for patients and for health care professionals.  You can register at the Sjogren's Society of Canada website

Physician Accredited Conference

The Sjogren’s Society of Canada is pleased to announce that the 2015 National Conference is an Accredited Group Learning Activity (Section 1) as defined by the Maintenance of Certification program of The Royal College of Physicians and Surgeons of Canada.  This activity was approved by the Canadian Rheumatology Association.      7 M.O.C credits.

 THIS CONFERENCE IS INTENDED FOR INTERNISTS, PHYSICIANS, RHEUMATOLOGISTS, DENTISTS,  OPHTHALMOLOGISTS, OTOLARYNGOLOGISTS, OPTOMETRISTS, HYGIENISTS AND PATIENTS

The conference is a CE for dentists, hygienists and healthcare professionals – PACE accredited, 7 CE credits.

Sjogren's Syndrome and the National Conference 2014 (Taking Control)

It's spring almost everywhere and time for the National Conference held by the Sjogren's Society of Canada.  "Taking Control" is the name of this year's event.

Spring Crocuses

There is a great deal of evidence that suggests that patient knowledge, skill and confidence with managing chronic disease is a good indicator of better outcomes.

This weekend I saw Sjogren's Syndrome spelled like this: Sourjons, Soujgrens,Sjorgen's and Sojourns, all by different people who suspected this was a diagnosis that they would be adding to their other autoimmune disease(s). You can only imagine how difficult their searches for accurate information are going to be.

The upcoming National Sjogren's Conference should be a great way for both patients and health care professionals to learn more reliable facts. All you need to do is register and come to the Delta Chelsea in Mississauga on May 3. Health care professionals who attend are eligible for continuing education credits.



I am planning to take notes and post what I learn as I have in the past. This conference has a distinctive special feature. For one hour the speakers and other volunteer heath care professionals from Sjogren's related fields will host round table talks where attendees have a chance to ask personally relevant questions.  It's great to have that opportunity and also interesting to hear about the problems others face.

Here's a quick overview of the speakers and their topics.

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 will start the program with "An Overview of Sjogren's Syndrome."

The talk on "Brain Fog in Sjogren's" by Dr. Sherise Ali, Neuropsychiatrst, is sure to get a good reception. This is a subtle complication that some doctors don't really believe in. The role of medical treatment is limited so for patients any ideas for taking control will be welcome. 

Dr. Cindy Marek's presentation is titled "Strategies For Oral Health and Comfort in Sjogren's Syndrome." For those of us struggling with this symptom new strategies and an understanding of  the causes will be welcome. Her field is dental pharmacotherapy. 

Dr. Rookaya Mather will discuss "Tear Film Dysfunction in Sjogren's Syndrome." She manages patients with complex ocular surface problems.

Dr. Ann Parke is a rheumatologist who studied in the UK and Canada before she settled in the US at the University of Connecticut. She is speaking about "Current Treatment Options and New Therapies On The Horizon." As an active researcher her opinions are always informed and welcome. She is the co-chair of the Sjogren's Canada Medical Advisory Board, as well as serving on the International Sjogren's Syndrome Advisory Committee. 

"Oral Manifestations of Sjogren’s Syndrome". Dr. Mahvash Navazesh, DMD, Dentist will raise awareness about the role of saliva in health and disease and will focus on the common oral complications associated with salivary gland hypo-function in patients with Sjogrens

Dr Raed Alhusayen "Sjogren's Syndrome and the Skin." His areas of interest are autoimmune skin diseases and skin lymphoma.

Dryness of the mucous membranes is a hallmark of Sjogren's Syndrome

This is the 8th Annual Conference.  You can register at the Sjogren's Society of Canada website


Notes for Health Care Professionals:
Physicians will earn 7.25 Continuing Medical Education Credits approved by the Canadian Rheumatology Association (CRA) and the Royal College of Physicians and Surgeons.

The Sjӧgren's conference this year will allow your healthcare professionals to receive accreditation if they attend. Optometrist, Dentist, Hygienist, and health care professionals can receive CE credits for attending the Saturday Conference.

Sjogren's Syndrome Lectures

Sjogren's Syndrome is an intrusive illness to deal with and it takes a lot of searching to find answers. While looking for links to post I came across these lectures by Dr Arthur Bookman. He's the Director of the specialized Sjogren's Syndrome Multidisciplinary Clinic at Toronto Western Hospital.

The first lecture is called What Our Patients Have Taught Us and has data about the survey study done among patients. It's a large file with pictures of the Schirmer's test and more.

It's continued in the second file and is on a very professional level since  it is a teaching lecture.

You may find in reading this that you have to look for some definitions. That's an effective way to learn correct medical terminology. This helps your ability to discuss Sjogren's Syndrome with your doctor.

Virtual both for Sjogren's from WAAD. Booth and lecture are virtual

Health literacy is strongly connected to good outcomes in illness, so the more you learn the healthier you are likely to be.

If you like to read scientific studies and lectures you could follow @sjogrensca on Twitter. Sjogren's Canada tries to post a new link to a study or useful fact every day. I still find that www.dry.org is a good source of useful tips. Dr Robert Fox, a Sjogren's expert put that site together.