Empower Yourself: 9th Annual Sjogren's Society of Canada Conference: Dr Ava Wu, Part 3

We were excited to see Dr. Ava Wu at our conference for the first time. 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. Dr. Wu 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))

Dr. Ava Wu, DDS

She demonstrated very graphically how little saliva is produced by a patient with Primary Sjogren's Syndrome. 

Dry mouth is more common in women than in men. This is the definition Dr. Wu used:  

"the sensation of oral dryness begins when unstimulated salivary flow decreases from 40-50% of the baseline flow rate." Dawes, Journal of Dental Research

Some of her suggestions were new to me, like adding flavoured oils such as mango, peppermint or lime flavoured olive oil, or omega 3 or flaxseed oil to drinking water to ease the dryness. That fits in with advice from my dental hygienist to swish a little olive oil around in my mouth when it is uncomfortably dry. I'm always happy to gain a new strategy. 

She stressed keeping gums healthy, and suggested onlays rather than crowns because less of the tooth is removed. It's more conservative dental care.
Dr Wu also suggested using a warm water baking soda and salt water rinse if you have discomfort in your oral cavity. 

Here's a picture showing the difference between an onlay and a crown:

She mentioned a prescription product called NeutraSal that comes in a powder form and is dissolved in normal tap water. It is a supersaturated calcium phosphate rinse that may be helpful for discomfort relief as well. 

I followed her suggestions for fluoride varnish for your teeth once a year at the dentist, and a mouth guard at night. If you use Prevident you should not rinse after you spit it out. Using MI Paste as a remineralizing agent is also recommended - That was good news because I currently use it on my teeth under my night guard.

Dr Wu has also made a video that gives surgeons tips on doing a salivary gland biopsy.

To increase the pH in your mouth you can use a bicarbonate mouth rinse. I'm sorry I could not write fast enough to get Dr. Wu's instructions. This type of rinse would be good to use after you eat acidic food.

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.

Taking Control Part 1: 2014 Sjogren's Society of Canada National Conference Dr Arthur Bookman: Sjogren's Overview

The 8th Annual Conference got off to a good start with comments from President and Founder Lee Durdon. She has been responsible for all of the conferences to date and they just keep getting better.

For the last two years the conference has been accredited as Multidiscipline CME/CE so we have started to see more doctors, dentists and hygienists among the attendees.

Lee said that Sjogren's is like an iceberg.

The Titanic reminds me of icebergs

On the surface there does not seem to be much happening, but the person with the condition knows that they have been besieged. Taking control seems impossible, so we hope the education and connection provided by the conference helps patients to develop a sense of optimism and empowerment.

Being able to cope better with this immune system gone wild is an enabling experience.

Dr Arthur Bookman's talk started the day. He called it "More Than a Nuisance". That is certainly a good description of our own personal iceberg experiences with Sjogren's. 

Dr Bookman is the Co-Chair of the Medical Advisory Board of The Sjogren's Society of Canada. This group of experts advises the Board of Directors and recommends scientific and research goals for the Society. You can see the member's names on the website of Sjogren's Canada.

Dr Bookman starts the conference yearly with an always updated "Overview of  Sjogren's Syndrome".  Of the patients seen at the Sjogren's Clinic that he oversees, 76% had a delayed diagnosis, most often because the healthcare professionals they saw were unfamiliar with the disease. This is the case even though most patients had already seen four professionals before being diagnosed. With numbers like that it is easy to see why our Society feels that increasing awareness is so important.

Dry eye and mouth is worse than it sounds

Dr Bookman also told us that 70% of clinic patients have dry mouth, 60% have dry eye. The diagnosis of secondary sjogren's syndrome may on the way out. Now patients with another autoimmune disease like rheumatoid arthritis, are described as having Sjogren's as well as RA.

One tip he gave us was to massage the salivary glands daily to avoid having them become painful and swollen. His instructional slide for this was by Dr Ava Wu, like this one on the Sjogren's Foundation site.

One hopeful sign for the future is a small trial that seemed to be successful. It describes an allogeneic mesenchymal stem cell treatment that had good results and no adverse events.

There's always a mouse - NOD or ICR?

Sjogren's is a medical syndrome with no one defining element or gold standard test. There are 6 criteria including dryness of eyes and mouth and 4 of them have to be met for a diagnosis. One of those 4 must be a salivary gland biopsy or a blood test for the Ro (SSA) or La (SSB) antibodies.

It is always interesting to hear about the Devins Illness Intrusiveness Scale in which patients with various disease rated the issues they face daily. Sjogren's ended up being almost the same as Multiple Sclerosis in terms of effect on quality of life.

Dr. Bookman at the round table discussion


Through trying to find Dr Ava Wu's slide for salivary gland massage I found this, in case you want to read about Sjogren's at a high level.
Sjogren's Syndrome book chapter  by Dr Ava Wu, Dr John Whitcher and Dr Troy Daniels
Head and Neck Manifestations of Systemic Disease  It's Chapter 2.

Links to Sjogren's posts from the past:

Part 6. Immune System Gone Wild. Dr MiriamGrushka and Dr Lisa Prokopich

Part 5 Immune System Gone Wild Dr Susan Abbey 

Part 4. Immune System Gone Wild. Dr Carl Laskin and Dr Izchak Barzilay 

Part 3 Immune System Gone Wild: SjogrensNational Conference 2013 Dr Bruce Jackson 

Part 2 Immune System Gone Wild. Sjogren's National Conference Dr.Papas

Part 1 Immune System Gone Wild Sjogren's National Conference 2013, Dr. Arthur Bookman 

Sjogren's makes Life More Complicated

2012 National Patient Conference

Sjogren's Products