Tag: sjogrens
-
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…
-
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…
-
The One Thing Missing From Your Sjögren’s Care Plan (And It’s Not Another Supplement)
When it comes to managing Sjögren’s—or even suspecting you have it—you’ve likely heard the usual advice: tweak your diet, adjust your lifestyle, add supplements, and follow your medication plan. And yes, those things are important, but they’re not the whole picture. As someone who’s lived this life and spends her days immersed in Sjögren’s support…
-
This One Mistake Could be Stalling Your Chronic Illness Journey
Quick storytime, friends. A real experience from one of my appointments. Neurology PA: I don’t understand why you are here. Me: I have been having progressing episodes of leg weakness for over a year. My neuromuscular neurologist did an EMG, but it was normal, so he no longer wanted to explore things with me. I…
-
MSing the Mark: Sjögren’s Mimicking Multiple Sclerosis
Note: I am not a medical provider. Opinions in this article are based on my own research and personal experiences. Mission: Diagnosis (Again) In my original blog post, I wrote about the frustrating battle I had to a Hypermobile Ehlers Danlos diagnosis. Finally, providers moved away from MS and a generic label that never fit…
-
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 