Tag: autoimmune disease
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The Road Less Traveled: Navigating a Rare Disease Diagnosis
It took me five neurologists over five years to finally get diagnosed with my rare disease: seronegative myasthenia gravis (MG). MG is a chronic autoimmune disorder that messes with your neuromuscular junction, where your nerves meet your muscles. It causes muscle weakness and fatigue. It’s rare—affecting about 1 in 10,000 to 1 in 20,000 people…
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3 Truths About “Why Me” Moments
Hi, friend. I see you over there, drowning in the existential soup of “Why me?” And listen, it’s valid. Chronic illness hit you like a meteor, and now you’re just trying to figure out how to dodge the next one. I get it. The thing is, I care about your “why me” because it’s part…
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Why the Name Change from Sjögren’s Syndrome to Sjögren’s Disease Is a Big Deal
Cue LL Cool J and my bad rapping and join me in chatting, “Don’t call it a syndrome!” Ok, bad pun out of the way… In 2024, the global Sjögren’s community dropped a truth bomb: they officially renamed Sjögren’s Syndrome to Sjögren’s Disease. And I, for one, couldn’t be more thrilled. At first glance, it…
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The Seronegative Struggle: Why It’s Harder to Get a Diagnosis (and What You Can Do About It)
If you’ve ever suspected an autoimmune disease but had normal labs, you’re not alone. Welcome to the seronegative struggle—a frustrating journey marked by delayed diagnoses, dismissed symptoms, and endless appointments. Seronegative means that your blood tests don’t show the antibodies commonly associated with a condition, despite clear symptoms. It’s a maddening limbo that leaves many…
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Navigating Chronic Illness with a Patient Advocate
So, you’re chronically ill. Your body’s throwing curveballs, the doctor’s office is practically a second home, and your insurance company treats you like that kid who keeps raising their hand, but never gets called on. Sound familiar? Yeah, I’ve been there. It’s exhausting. That’s where an independent patient advocate comes in, your trusty sidekick in…
Little Engine Patient Advocacy 