I’m rare. Lucky me!

/end sarcasm

It’s Rare Disease Day in the USA & while that has nothing to do with speculative fiction, it does have to do with me.

When I was first diagnosed with Sjögren’s (auto-immune disease), I thought it was rare, but I soon learned that it’s only rare when you look at the percentage of funding dollars that goes towards finding a cure. It often goes undiagnosed because doctors don’t understand it & often act like it’s just “dry eyes.”

What is Sjögren’s?

Sjögren’s is the 2nd most common rheumatic autoimmune disease in the US. It’s three times more common than related diseases like Lupus and MS, yet those two get a LOT more funding. Left untreated, Sjögren’s can lead to the destruction of nerves & massive inflammation of every organ.

In other words, it can kill you.

Besides Sjögren’s, I also have MCAS (Mast Cell Activation Syndrome), which also causes wide-spread inflammation & attacks every organ. MCAS can be triggered by ANY viral infection, though C0VID really likes to trigger it.

What is MCAS?

Think of Mast Cells as the fire alarms and fire trucks of your body. They travel around looking for invaders (aka fires). When they see something harmful, they send signals to your brain to do things like open up your blood vessels, contract your muscles, fill your tissues with fluid, etc. This is good when you have germs or other issues going on, but sometimes they activate when they shouldn’t, which causes you to have all allergic reaction. In other words, they attack healthy cells.

Because MCAS can make anything you eat, touch, or inhale trigger anaphylaxis, it can be deadly. Also, it tends to flood your tissue (which includes organs) with inflammation, which can cause some serious damage. Basically, folks with MCAS live with chronic and sometimes constant swelling/inflammation, shortness of breath, hives, rashes, diarrhea, vomiting, and other symptoms. My wife, Molli, also has this. Both of us had it triggered by COVID.

Currently, the treatments we’re using aren’t working. We’re about to try a shot that costs $30,000+ a year (per person). If it works, that’s both a good thing & a bad thing considering that’s the cost AFTER insurance.

I have several other auto-immune diseases because as we spoonies say, they never come alone, and as we gamers say, gotta catch ’em all! Wait, that was about Pokémon, wasn’t it? I kid, but I swear it seems that way with auto-immune issues.

I wish our government spent more on medical research instead of less. The cuts that are happening will result in people like me dying. If you have the spoons, do something for me today–donate to a medical research org (like the Sjögren’s Foundation) or call your representatives & demand we get folks like Trump, Vance, & Musk out of our government.

P.S. You can’t tell but in honor of retro day this week, I’m wearing a Strawberry Shortcake shirt that says Have a Berry Day and has a picture of the gal herself. 😉

I don’t know who said this but I really like it:

The fact that my entire body cracks like a glowstick whenever I move and yet refuses to actually glow is very disappointing.”