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I’ve recently been privy to a conversation about what type of disease sarcoidosis really is. It is often referred to as auto immune but reputable organizations like The Cleveland Clinic’s Sarcoidosis Clinic, refer to it as an inflammatory disease. The Mayo Clinic also refers to sarcoidosis as an inflammatory disease. So, why is it so important to make the distinction anyway and, why do some people get so upset when sarcoidosis is referred to as an auto immune disease? These are questions I cannot answer because honestly, I don’t really care about the distinction and frankly, since there is no known cause or cure for this disease and it is a disease that involves the immune system and also causes inflammation, maybe it really doesn’t matter.

The only reason I can see to make a differentiation is that auto immune diseases are typically described as diseases in which the body’s immune system attacks healthy cells. What happens in sarcoidosis is a bit different. What happens in sarcoidosis is actually an immune response to something real or even imagined, where the immune system goes into high gear and then forgets to chill out again after the threat is gone. As a result, immune cells begin to form in clumps, called granulomas, in and around organs. These clumps are not actually dangerous on their own but they can begin to interfere with proper organ function just by being in the way and because the immune system stays in high alert there is also sustained inflammation in the body, both of which can begin to cause organ damage over a long period of time.

So with sarcoidosis, the body is not actually attacking itself as it does with traditional auto immune diseases. Instead, the immune system is attacking a threat as it is designed to do but then it falters and doesn’t retreat. The “off” button breaks. The reason for this is uncertain, which means the cause of sarcoidosis is unknown and there may very well be many different mechanisms that trigger an immune response of this nature. This could also explain why sarcoidosis is such an individualized disease. It does not seem to follow any particular pattern and patients with it report a wide variety of symptoms with wildly differing degrees of severity.

In the final analysis, what jumps out at me isn’t what classification this disease falls in. It is that since there is no known cause, there can’t be a cure and we need a cure. We need a cure because people do die from this disease. We need better treatment too because the treatment is often worse than the disease. Since sarcoidosis is a disease that involves the immune system and causes inflammation, it is easy to understand why there is confusion about what it actually is. Until better research is done to figure out why sarcoidosis causes such a powerful and potentially life threatening immune response, it will remain impossible to truly unlock the mystery of this maddening, life altering and heartbreaking disease.