I have lived with the symptoms of Sjögren’s Syndrome since I was a child. It took a lot of time and effort to get diagnosed. Doctors did not find it without me directing them. Men and children are not typically considered candidates for Sjogren's Syndrome.
Why is there such a struggle to be diagnosed with a relatively common autoimmune disorder? Sjogren's Syndrome is unfortunately not well known in the medical community.
In the USA alone, it is estimated that it affects four million people. This means that one in less than 100 people is the expected occurrence of the disease.
Of these people who have Sjogren's Syndrome, ninety percent will be women and 10% will be men. This has been the expectations set for years. The group of people most recognized are women in their fifties or older. That has also typically been the focus, but is it accurate?
Over the last several years, it has become apparent that people of all ages can present with Sjogren's Syndrome: men, women, and children. People of both sexes, and of different ages. It was also quipped by a speaker last year at the Sjogren's Syndrome Foundation (2018) that his dog was also now diagnosed with Sjogren's Syndrome and has required treatment.
There have always been men diagnosed with Sjogren's Syndrome, but it is a real challenge for men to be diagnosed. One of the reasons that men have struggled with diagnosis has been that the primary tests that are done are antibody tests (SSA and SSB). It is an agreed upon fact that thirty percent of people with Sjogren's Syndrome will never present with these antibodies. The other test done to check for Sjogren's Syndrome is typically a lip biopsy; Many doctors will not proceed to a lip biopsy, typically because it crosses specialties. The diagnostic criteria also keeps changing for a diagnosis of Sjogren's Syndrome.
At the Canadian conference (2018), a research immunologist (US based) presented findings of how he detected Sjogren's Syndrome earlier in both men and women. He also presented an interesting fact: Men rarely present with SSA antibody. This is a concern because many rheumatologists will stop testing after checking for SSA and SSB antibodies.
The diagnosis (for Primary Sjogren's Syndrome) no longer tests for both SSA, and SSB. Diagnosis is based solely on the SSA antibody, or a positive lip biopsy, for a diagnosis of Primary Sjogren's Syndrome. Other criteria must be met, but these are the main criteria for diagnosis.
Primary Sjogren's Syndrome is a diagnosis of Sjogren's Syndrome alone without another autoimmune connective tissue disorder present . Secondary Sjogren's means having Sjogren's Syndrome with a secondary autoimmune connective disorder (like Lupus, or Rheumatoid Arthritis). This is for research purposes only and does not mean that a person has a different disease or a worse disease: they have Sjogren's Syndrome. This is done for research purposes and for confirming the results of medical trials and research on Sjogren's Syndrome specific research.
In general, most doctors are not familiar with Sjogren's Syndrome. This has improved, but most of the doctors, aware of the disease, are expecting women over fifty years of age that are presenting with dry eyes, and dry mouth. They are not typically thinking of men. Men are considered the rarity.
The research immunologist observed Sjogren's equally in males and females in the testing that he was doing. He was looking for it using a different criteria, than just the SSA and a lip biopsy. He was able to detect it earlier, and predict accurately how it would develop and how to prevent it if caught at early enough stages.
The existing criteria for diagnosis does not recognize Sjogren's until damage has occurred. The "SJO" test which is now being utilized (in some cases) to screen for early Sjogren's Syndrome has some of the extra tests included. These tests check for many other markers outside of the usual tests which can include ANA, SSA, SSB, and RF.
At this point, it may be questionable to test men for the SSA antibody alone, when they are going to be negative in most cases.
There are many men who live with Sjogren's Syndrome who will never be diagnosed properly, and will live with a collection of many different issues and no centralized management or treatment. This is also a very real scenario for many women, but the doctors are more likely to investigate women then men.
The point of this article is to draw attention to the different groups who are affected by Sjogren's Syndrome, but less likely to be recognized and tested properly. Better recognition of the disease is in the best interests of men, women and children. Men are now starting to be focused on by Sjogren's organizations. This is key to getting more information into the right hands: knowing who their patients are.
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I am not a medical professional. I am sharing this information as is.