BATON ROUGE, La. (BRPROUD) – According to the National Institute of Neurological Disorders and Stroke, approximately one to four million people in the United States suffer from a painful autoimmune disorder that is frequently misdiagnosed and misunderstood by family and friends.
Sjögren’s is defined by the American College of Rhuemotology as, “a systemic autoimmune, rheumatic disease that affects the entire body.”
Sjögren’s predominately affects women as opposed to men, and some patients wait years before reciving a proper diagnosis.
One woman who experienced this told BRProud, “Many women don’t get diagnosed for years as many doctors blow it off as menopause. I realize now, that I had symptoms as early as eight years old.”
What causes Sjögren’s?
While the exact cause of Sjögren’s remains a mystery, Johns Hopkins Medicine points to research indicating that the culprit lies in an abnormal reaction of the body’s immune system.
Johns Hopkins states, “A person who develops Sjögren’s syndrome most likely inherits the risk from one or both of their parents, but in addition, there’s been some sort of environmental impact—such as a viral or bacterial infection—that causes it to become active.”
One woman told BRProud she was diagnosed with Sjögren’s after undergoing surgery for implants.
She explained, “It was triggered by implants and I only had them less than three months.”
She swiftly made plans to have the implants removed due to their toxicity, but even this was not a cure-all.
She went on to say,”But guess what? I still have a life altering autoimmune (disorder)! Had I known I would have never….”
What is it like to live with Sjögren’s?
Researching the symptoms of Sjögren’s will yield a plethora of results such as: joint and muscle pain, abnormality of taste, loss of taste, a feeling of pins and needles, dental cavities, dryness of mouth, mouth ulcers, hoarseness or impaired voice, difficulty swallowing or dryness, dry cough, dry eyes, dry skin, vaginal dryness, fatigue, and swollen lymph nodes.
Sufferers frequently experience ‘flares,’ which are episodes of intense joint pain followed by periods of relief.
This can be difficult for friends and family to understand.
As with many autoimmune disorders, the sufferer may appear to be in good health and may not experience severe pain for weeks at a time.
So, when a flare suddenly occurs, it can be startling to family and friends who don’t understand the severity of pain the sufferer is experiencing.
One woman who was diagnosed with Sjögren’s, Fibromyalgia, Psoriatic Arthritis, and MGUS said she feels fortunate to have an amazing support system, but not everyone is so lucky.
She told BRProud, “…it’s heartbreaking. Family and friends don’t get it, tell them to eat better, take a walk, take vitamins, or they’re overthinking it. It’s very sad.”
Treatments for Sjögren’s
Doctors typically treat symptoms of Sjögren’s with eye drops, eye surgery, medications like Plaquenil and drugs such as Trexall that suppress the autoimmune system.
Though there is currently no cure for Sjögren’s, many people who live with the syndrome find ways to remain positive.
One woman explained that she’s grateful for the relief that her prescribed medication affords and that she’s learned to take each day as it comes. She said, “‘Strong, but in Pain’ is my favorite quote that I use often. But on the days that I am not feeling as strong, I often will say “my everything hurts” and that’s okay too! Receiving my Lupus diagnosis was a day I’ll never forget. Beginning immunosuppression therapy was absolutely terrifying, but it’s been the only thing to make me feel like I’m in my early 20s again.”
On a similar note, Kathy Petty-Ballard, who was diagnosed with Sjögren’s Syndrome, Rheumatoid Arthritis and Fibromyalgia 11 years ago, summed it up this way, “These diseases do not define me. I am so much more than the sicknesses, and I must remind myself every day!”
Some days are harder than others. I choose to be as positive as I can, for as long as I can. On good days, I am good, on bad days/weeks, I let myself feel bad and pity myself for 15 minutes, then I put my big girl pants on and take on the day with whatever energy and power I do have. Sometimes it’s very little and I do what I can to get through the day, but I do get through the day.
Woman diagnosed with Sjögren’s Syndrome
Click here for additional information about the symptoms and treatments associated with Sjögren’s Syndrome.