Pronouncing Sjogren’s is not as hard as living with it

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sjogren's, two women smiling

My parents have been in retirement for over a decade, and they joke that their hobby is sitting in doctors’ waiting rooms. Some years ago, my mom began experiencing concerning medical issues. She went from specialist to specialist trying to find the answer. Finally, she learned that the cause of her aches, pains, fatigue, dry mouth and rashes was Sjogren’s syndrome.

You may be trying to get your tongue around the “j,” but it is pronounced “SHOW-grins.” Sjogren’s is an autoimmune disorder that usually manifests with dry eyes and dry mouth. For a long time, we had noticed Mom blinking rapidly and clearing her throat when she talked. When those symptoms and others became worse, she mentioned them to her doctor. This sent her on a quest for relief and a rollercoaster ride of futile treatments.

The effects of Sjogren’s

It is not surprising that doctors first diagnosed Mom with lupus and tested her for rheumatoid arthritis. Only through extensive blood work were Mom’s doctors able to reach a definitive conclusion.  However, these other inflammatory conditions often go hand in hand with Sjogren’s. The inflammation in a Sjogren’s patient often affects the salivary glands and tear ducts primarily. In fact, some may pass off those symptoms as allergies, side effects of other medications, or even just getting older.

However, as the disease progresses, it can lead to eye infections, thrush, tooth decay, and vasculitis. Inflammation and infection may spread to the kidneys, liver, or lungs. Some patients of Sjogren’s experience neurological issues, like weakness or numbness in the hands and feet. Sjogren’s also increases (perhaps by five times) a patient’s chances of developing non-Hodgkin lymphoma.

A family legacy

Mom reminds me that Sjogren’s may be genetic. We both recall my grandmother’s endless blinking, her thick, dry tongue, and the fiery rashes that came and went on her legs. We remember with some remorse how we impatiently dismissed her complaints of vague symptoms. Doctors could never find the source, and my grandmother suffered in confusion.

Don’t think I don’t consider that I might be dealing with this at some point in my life. When my eyes burn for no apparent reason or my joints ache when I get out of bed, I am filled with dread. There is no cure. My mom knows this, and she patiently endures the doctors’ experiments with this or that treatment and the often-horrific side effects. They are only managing individual symptoms.

So my parents spend their weeks visiting specialist after specialist: rheumatologists, dermatologists, ophthalmologists, nephrologists, cardiologists, and so on. Mom is a trooper, and Dad is her stoic support. If I inherit any of their medical issues, I hope I also inherit their optimism and tenacity.

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