In an effort to increase local awareness of Sjogren’s among medical professionals in my own community, I prepared the following letter which I plan to deliver next week to local physicians, dentists, nurse practitioners, and optometrists. If you have Sjogren’s and would like to copy and paste any portion of this letter for similar purposes please do so. Thank you to Dr. S. Schafer for permission to use her statistics re: Breast Cancer, and the story comparing them to Sjogren’s at her medical presentation.
Dear Medical Professionals:
Saturday, July 23rd was World Sjogren’s Day, a day set aside to promote awareness of Sjogren’s Syndrome. I was diagnosed with Sjogren’s in 2002. The typical responses I have heard from medical professionals when I tell them I have Sjogren’s have been:
“I have never heard of that, what is it?”
“Show what? Can you spell it so I can do a search?”
“Oh that’s nothing; it’s just dry eyes and dry mouth.”
“Venus Williams has that, right? She still plays competitive tennis so it’s not that bad.”
Though Sjogren’s is one of the most commonly occurring connective tissue autoimmune diseases it gets little mention in medical school lecture theatres. It is rarely diagnosed until several years, sometimes decades, after onset. Sjogren’s , like Lupus, can present with a myriad of symptoms varying from patient to patient, eluding even the most skilled diagnostician. Blood tests for antibodies do not always come back positive especially in early stages of the disease.
As a physician who has Sjogren’s herself was prepping for her most recent Sjogren’s presentation for medical residents, she ran across breast cancer stats. In the US, the 2016 estimate of patients living with breast cancer or a history of breast cancer is 2.8 million. People diagnosed with Sjogren’s are estimated at 3-4 million plus. Both diseases mostly (but not 100 percent) impact women. Both have overall survival rate of approximately 90 percent, or on the other side of the coin, 10 percent mortality directly from the disease. Apparently the medical residents were quite stunned to hear about these comparable statistics. However when it comes to public education and awareness, Sjogren’s lags far behind.
It is my hope you will take time to read through the enclosed information sheets provided by the Sjogren’s Foundation, sharing the facts about Sjogren’s with your colleagues and staff.
If you would like to read a medical text about the diagnosis and treatment of Sjogren’s, I would recommend “The Sjogren’s Book – 4th edition” edited by Daniel J. Wallace, MD.
To find out more about the recent development and dissemination of the first USA Clinical Practice Guidelines for Sjögren’s, contact the SSF office at 1-800-475-6473 or visit their website: http://www.sjogrens.org
If you are curious about my personal experience with Sjogren’s, along with several related diagnoses that followed, please feel free to contact me at xxx-xxx-xxxx or via e-mail: firstname.lastname@example.org, or visit my blog: http://www.wantonwordflirt.com and click on “Sjogren’s”. I welcome discussion, feedback or questions from medical professionals or patients – let’s learn together.
P.S. Why July 23rd? World Sjögren’s Day was created to commemorate the birthday of Dr. Henrik Sjögren, the Swedish ophthalmologist who discovered Sjögren’s in 1933.
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Again, Suzanne, you have written well about a difficult topic… difficult in the sense that it is not easy to get the message to many who should be receptive to know more about the condition.
A suggestion for a future blog… how to deal with a spouse who has no patience to be in the company of their spouse’s friend who is at stage 3-4 of dementia! Yes you are reading this correctly!