So yesterday we got a quick and simple definition of sarcoidosis. It’s when inflammation doesn’t go away after something triggers the immune system. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in the body.
Sarcoidosis is a disease that does often go into remission within a few years of diagnosis and a lot of times treatment is not even necessary. Some folks don’t even know they have the disease because they remain asymptomatic and the disease is found by accident on an x-ray taken for some other reason. That’s the good news about sarcoidosis.
But, because this is a sneaky disease that mimics other diseases, and rarely presents itself the same way for any two patients, and because the medical community seems to know little about it, sarcoidosis can also be a complex beast for some patients.
So, here’s where sarcoidosis gets tricky. It’s when those clumps of cells, also called granulomas, not only don’t go away, but when their presence begin to interfere with proper organ function. And, just to make it interesting and even more complicated, it should be understood that these cells do not always cause damage. They do with some patients but not others and the reasons are unknown…as is the case with much of this disease.
Once organs are damaged as a result of this disease, it tends to become more chronic in nature and can be harder to treat.
Additionally, it should be understood that remission can be a tricky concept with this disease. Some patients, as previously stated, fully recover, while others can have years of stability, only to have the disease reappear without warning.
Remission itself is a complicated word because while it can mean a full recovery for many patients, for several others, it means a stabilization of symptoms through medical management. So even when some patients are told that they are in remission, they are not necessarily symptom free. Symptoms such as fatigue, shortness of breath and joint pain can create life long problems for patients who are technically in remission.
There’s still much to be learned about sarcoidosis but because it considered to be “rare”, little quality research gets done to improve the lives of patients who suffer with it and because there is no known cause and no known cure, treatment is aimed at symptom management only.
So for those of us who suffer with a more chronic version of this disease, it’s very frustrating and really important for the people who love us to learn all that they can about it because we need you to have a better understanding of our experience.