July 23rd is World Sjogren’s Day. This day was designated to celebrate the birth of Dr. Henrik Sjogren, the Swedish Ophthalmologist who discovered Sjogren’s Syndrome in 1933. In addition to the acknowledgement of the man who discovered the illness, the day is also meant to create awareness of Sjogren’s and the many faces of the disease.
Last year for World Sjogren’s Day, in an effort to create awareness of Sjogren’s in my own community, I wrote a letter briefly introducing my personal experience with the illness and included a basic fact sheet from the Sjogren’s Syndrome Foundation to enclose with it. In the letter I included my personal contact information and an invitation to contact me if anyone wished to learn more about my own journey with Sjogren’s.
I personally delivered a copy of the letter to each physician at our medical clinics, as well as to all the dentists and optometrists in town (over thirty individuals). Some of these professionals see me on a regular basis for care, I’ve met others at the walk-in medical clinic, and unfortunately I’ve had an introduction to a couple more for emergency care at the hospital.
Because of my many encounters with health professionals in our community I knew many were still not aware Sjogren’s Syndrome even existed. Most of those who had heard of it believed it to only involve dry eyes / dry mouth. Optometrists and dentists usually are more knowledgeable about that aspect of Sjogren’s for obvious reasons. Some medical professionals know Venus Williams has it and she continues to play competitive tennis from time to time, hence their assumption it is “not that big of a deal”.
Imagine having an illness that many medical professionals have never heard of. Imagine they ask you to say the word Sjogren’s again, so they can catch the correct pronunciation. Imagine they ask you to spell it as they whip their cell phones out so they can Google it. Ok, in fairness they may use medical search engines not just Google and Wikipedia as a primary source. At least I hope so. As a patient I certainly refer to more reputable sources of information, including established medical journals and the Sjogren’s Syndrome Foundation.
Imagine how you might feel knowing someone who has never heard of the illness you have is going to be treating the symptoms you are presenting with. Imagine you know more about your illness than the general practitioner doctor, or sometimes even more than the specialist. Sadly some medical schools never mention Sjogren’s at all (this was verified by research in the USA), some general practitioners and Rheumatologists recall a two minute mention of it as just dry eyes and dry mouth.
Imagine that I am not exaggerating. Imagine that last year my Rheumatologist, who is the specialist who would have supposedly received the most education on Sjogren’s since it is an autoimmune connective tissue disease in her speciality, writes a letter back to my local doctor saying “I do not believe the cause of her fatigue is Sjogren’s” (though it should be noted she offered no alternative explanation) when the Sjogren’s Syndrome Foundation physicians have now publicly identified the hallmark symptoms of Sjogren’s being “Dryness, Pain, Fatigue”.
Then the nurses and doctors think maybe have a trust issue or two when receiving medical advice and care. It is not difficult to imagine why that might be!
In defense of the health professionals I must tell you the main reasons “Sjogren’s neglect” persists within medicine. Firstly, because it is not “just dry eyes and mouth”, it is a complicated illness. Much like Lupus, each patient may present with a myriad of symptoms, even while not “looking” sick.
There are no blood tests that specifically correlate with severity of symptoms. Diagnosis is difficult because there is no one test or even group of tests that diagnoses Sjogren’s early and accurately, thus diagnosis is often delayed, sometimes by years or even decades. Misdiagnosis is also common, with fibromyalgia, chronic fatigue, and depression being some of the more common misdiagnoses. Thankfully Dr. Sjogren discovered the Syndrome. Even more people would be suffering today, waiting for diagnosis had it not been made official, and given a name.
Many doctors, even specialists, do not believe serious organ (liver, lung, etc.) complications can occur with Sjogren’s, but it can and does. As I mentioned earlier, even Rheumatologists are not always up-to –date on Sjogren’s care management. This can perpetuate a cycle of ignorance when a Rheumatologist forwards inaccurate information back to a patient’s local physician.
Clinical studies for Sjogren’s lag far behind other autoimmune connective tissue diseases. I have been known to comment, tongue-in-cheek, that the reason you don’t commonly see big fund-raising runs such as Cancer’s “Race for the Cure” for Sjogren’s patients to raise funds for research is because we are all just too damn tired to organize an event or run in one.
Although Dr. Sjogren identified Sjogren’s Syndrome in 1933, it was not until last year, 2016 that a standard of care in the form of clinical practice guidelines for Rheumatologists, Dentists and Ophthalmologists, was generated for the management of the illness in the USA. Even though treatment guidelines now exist, there remains no single treatment protocol identified for Sjogren’s Syndrome. A recent study showed that Sjogren’s had the same effect on quality of life as Multiple Sclerosis. Yet unlike MS, Sjogren’s patients cannot go to their specialist and be told definitely what treatment will be used. In some cases, Sjogren’s is left untreated because the doctor does not take the patient seriously until life-threatening organ involvement occurs. Remission of symptoms is possible, but in most cases Sjogren’s is progressive and in all cases incurable.
So, back to the letter I hand delivered last year for World Sjogren’s Day. You may be wondering what type of response I received. That part of the story is short. Nothing. No response. None. Silence. Crickets.
I was not surprised whatsoever that not a single person specifically contacted me about the letter afterwards. Doctors are busy people. I did however expect the practitioners I see regularly might at least mention it at my next visit. Honestly, even if someone said something derogatory such as a sarcastic “So, you think you are a Sjogren’s expert now?” I would have been pleased because I’d know they at least looked at the letter, even if not reading the information in its entirety.
I guess my hope is if they did not read the information themselves, perhaps they threw it in a nurse’s direction and the nurse maybe had a read before putting it through the shredder. I remain ever the cynic, ever the optimist.