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.
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.
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:
You said:
ReplyDelete"One of those 4 must be a salivary gland biopsy or a blood test for the Ro (SSA) or La (SSB) antibodies."
I am SO happy that you are not one of the majority of autoimmune/Sjogren's bloggers who advocate that you merely have to have subjective symptoms of dryness plus anything else to justify a claim that you have Sjogren's.
In fact, you MUST have either positive SSA or SSB anitbodies, or else a positive lip biopsy, to be correctly diagnosed with Sjogren's, just as you said.
The term "Seronegative Sjogren's" means that your bloodwork is negative for SSA and SSB, but that your lip biopsy is positive for Sjogren's, and it means nothing else.
For some reason, which might possibly include vast amounts of mis-information on the majority of Sjogren's blogs and Sjogren's Forums such as "Sjogren's World" (and other Forums), there are hordes of delusional people claiming to have "Primary Sjogren's" who tested negative for both SSA and SSB, and who either never had a lip biopsy or else had a negative lip biopsy. These people have what I call FAKE SJOGREN'S, and there are so many of them that you cannot read any responses to any Forum Posts because you don't know who really has been correctly diagnosed with Sjogren's and who has Fake Sjogren's.
These Fake Sjogren's people are noted for being impossible to reason with. They are truly delusional. They think you can have Sjogren's simply because you have either dry eyes, or dry mouth, plus any other collection of symptoms, with no positive bloodwork or lip biopsy.
One famous person with Fake Sjogren's is Venus Williams, who never had positive bloodwork or a positive lip biopsy. I wish she would apologize and then disappear from the Sjogren's community - she is doing WAY more harm than good. She is actually only doing harm, and doing no good at all.
Again, congrats on being one of the few sane autoimmune/Sjogren's bloggers on the internet! Keep up the great work!