World Sjogren’s Day 2020

Today is World Sjogren’s Day. Sjogren’s Syndrome is a chronic autoimmune disease in which the white blood cells attack the moisture glands. We celebrate World Sjogren’s Day on the birthday of the Henrick Sjogren, the doctor who discovered the disease in 1933.

What is Sjogren’s?

Sjogren’s (pronounced Show-grins) is a systemic disease. Although it’s mainly known for the symptoms of dry eyes and dry mouth, it affects the entire body. Some of the worst symptoms are debilitating fatigue and joint pain. Sjogren’s is similar to Lupus, in that way.

These organs can also be damaged: kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. So, you see, Sjogren’s is a serious illness and because it is chronic, we face these problems for the rest of our lives.

It’s amazing how little awareness there is of Sjogren’s. Almost everyone has heard of Lupus, but very few know about Sjogren’s. The difficult pronunciation of the name doesn’t help, either. But, I can verify that over the years, many doctors I’ve met can’t pronounce it and don’t seem familiar with it.

sjogrens pain

My Sjogren’s Story

This unfamiliarity of the disease makes it even harder to get diagnosed. Although I showed symptoms of an autoimmune disorder back in 2011, I wasn’t diagnosed until January of 2018. Most doctors who tested me for a positive ANA told me that I might someday be diagnosed with Lupus or another autoimmune disease.

Finally, in December of 2017, a doctor checking me for dysautonomia suspected Sjogren’s. He scheduled a lip biopsy and it came back positive for Sjogren’s. From there it still took 8 months for me to find and see a rheumatologist. Rheumatologists are in short supply in much of the US. This also makes it very difficult to get an autoimmune disease diagnosis.

So, I totally understand why we need more awareness campaigns for Sjogren’s Syndrome. The suffering of Sjogren’s patients shouldn’t be ignored. There is no treatment for Sjogren’s Syndrome. Patients are treated for individual symptoms. This means we are placed on many drugs (that often have moderate interactions). Plaquenil is the first drug used for Sjogren’s patients.

eyedrops

The symptoms that I deal with are: dry mouth, dry eyes, hoarseness, choking on food, crumbling teeth, thinning hair, dry skin, rashes, joint pain, severe fatigue, Small Fiber Neuropathy, and chronic kidney disease stage 3.

Do you know anyone who has Sjogren’s Syndrome? I would love for you to share this with people you know that have chronic illness.

@2020, copyright Lisa Ehrman

Disclaimer: I’m not a medical expert. I am only sharing my opinions, and this is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.

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