They call sarcoidosis the snowflake disease and they say it's because no two cases are alike. My personal theory has something more to do with what a cold bitch biology can be. It is true, though, that sarc symptoms, progression and severity all differ widely from person to person so please keep that in mind if you've stumbled across this page because you're looking for summary of what to expect from your new friend Sarcoidosis. I plan on throwing my experience at you but you'll likely only identify with parts of it. That said, I hope you enjoy the ride.
So first... a bit about sarc. The medical dictionaries call it sarcoidosis. Your doctor will call it sarcoid. Your friends and family will stumble with it for a while before giving up entirely and calling it "your thing". If you think I'm joking about that, I'm not. Seriously... this video exists. Anyway, I call it sarc because why add the extra syllable. Somehow, it sounds empowering, which is much better than its Greek etymology, which translates to "a condition that resembles crude flesh" or my, more colorful version, "why the fuck is my skin flaking off!". Eventually, they found out that the skin bit of the fun of sarc is only the tip of the iceberg. It often attacks your lymph nodes, lungs, brain and heart. I say "often" but it picks a major organ (heart, lungs or brain) often enough that they've given the affected areas their own version (cardiac sarc, pulmonary sarc or neurosarc). And what attacks them, you ask? Well, you do. Or more specifically, your immune system does.
Sarc is an autoimmune disease wherein your own immune system goes rogue and commences a search-and-destroy mission on whatever cluster of cells it decides it doesn't appreciate anymore. The jilted cells get all manner of butt-hurt, swell up and go on strike. This usually happens in clusters called granulomas, but I've found that to be more of a guideline than a rule. More on that later. Granulomas are similar to cysts or tumors but are made up of immune cells put there to confine any foreign matter that the body can't break down through regular channels. Say a bit of mold makes its way into your lungs. Your body protects itself by attempting to break it down or expel it. If it can't, it launches a barrage of cells at it so it can't cause any trouble. With sarc, the immune system launches these cells for no known reason whatsoever at various parts of your body that may or may not have been behaving as they should the whole time. Lung involvement (pulmonary sarcoidosis) is the most common. That's what I was first diagnosed with.
In addition to granulomas, general inflammation can occur, sometimes causing joint pain, skin issues or various other maladies. In my case, fevers and a whole bucket of other weird stuff happens as well. Much, much more on that later.
For now, I'll say the good news is, some people go into remission and have no further issues once diagnosed. Some people require treatment but they deal with it in mild, irregular bursts called flares. Some people, like myself, have to find some way of venting frustration arising from all the weird shit that keeps happening to them. The bad news is, it (and complications from it) can be fatal. The really stupid terrible news is that no one has any idea which category you'll fall into. Doctors don't know much about it. Those who specialize in this sort of thing (Rheumatologists) are pretty much flying nearly blind. They don't know what causes it. They barely know how to treat it and they certainly don't know how to get rid of it. Try not to let all this get you down though. You're going to have some really interesting stories to tell friends at parties.
