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What exactly is sarcoidosis?

Isn’t this a good question? I certainly think so. It is also sometimes a hard question to answer in layman’s terms, in a way that is easy to understand and provides people who ask a simple enough explanation that they don’t gloss over with boredom before you’ve even figured out how to reply. After all, most people only ask to be polite but it’s still an opportunity to raise awareness and to educate!

So, here’s my answer:

“What happens in sarcoidosis is that we have an immune response to something and then our immune system doesn’t know how to turn itself off again. This causes the formation of something called granulomas which are immune cells that end up forming clumps, still trying to fight an enemy that was never there or that it already beat. These clumps by themselves are not dangerous to the body. They only become dangerous when they begin to interfere with proper organ function causing or creating scar tissue in the affected organ. They are also the cause of massive inflammation the body. Inflammation is a natural response in the body’s effort to heal itself. But in the case of sarcoidosis, our immune system seems to stay on “high alert” after a crisis passes and doesn’t know how to calm down. This inflammation begins to cause our bodies harm because it stays with us for an extended and unnecessary period of time.”

I explain to those who ask about my disease, that despite the fact that the first case of it was documented as far back as the late 1800s, there is still no known cause or cure for this disease. Many people with it experience mild symptoms and manage quite well, requiring no treatment at all. Others fair differently though, experiencing a more chronic version where treatment becomes necessary in order to halt or at least minimize organ damage. In these cases the disease creates life altering complications. There are no good explanations as to why sometimes these granulomas, these clumps of cells, cause lasting damage for some people but not others. Why these cells dissipate for some but leave others with scarred organs and a heap of medical problems remains a medical mystery.

I tell people that a quick internet search on sarcoidosis makes it seem like a cakewalk because it usually highlights the milder form of sarcoidosis. This simply isn’t the case for many who suffer from it though. Our realities are quite different. People sometimes need organ transplants as a result of this disease and others die from complications associated with it.

And, it always amazes me that there is still an argument, misunderstanding…whatever you want to call it…within the medical community about how to classify sarcoidosis. It often gets lumped in with auto immune diseases, yet it doesn’t quite meet the right criteria for this, so then some call it an inflammatory disease, while others call it a “hyper immune” disease. I honestly don’t give a rat’s behind what doctors call it. The mere fact that they cannot agree or don’t know is a sure sign that there is still much to be learned about the disease. And, as we all already know, there certainly aren’t enough research dollars being used to figure what it actually is or how best to treat it, so in the meantime many of us with it…suffer!

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