Sarcoidosis - Describe Your Experience

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What is sarcoidosis?

Sarcoidosis is a disease that results from a specific type of inflammation of tissues of the body. It can appear in almost any body organ, but it starts most often in the lungs or lymph nodes.

The cause of sarcoidosis is unknown. The disease can appear suddenly and disappear. Or it can develop gradually and go on to produce symptoms that come and go, sometimes for a lifetime.

As sarcoidosis progresses, microscopic lumps of a specific form of inflammation, called granulomas, appear in the affected tissues. In the majority of cases, these granulomas clear up, either with or without treatment. In the few cases where the granulomas do not heal and disappear, the tissues tend to remain inflamed and become scarred (fibrotic).

Sarcoidosis was first identified over 100 years ago by two dermatologists working independently, Dr. Jonathan Hutchinson in England and Dr. Caesar Boeck in Norway. Sarcoidosis was originally called Hutchinson's disease or Boeck's disease. Dr. Boeck went on to fashion today's name for the disease from the Greek words "sark" and "oid," meaning flesh-like. The term describes the skin eruptions that are frequently caused by the illness.

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See what others are saying

Comment from: Marie, 55-64 Female (Patient) Published: January 12

I started losing weight (unexplained) so I went to my doctor who told me that as I get older my weight shifts. I said I understand but I'm not shifting I had lost 37 lb. I asked for a body scan which stated I had active lymphoma (hilar, liver, spleen and supraclavicular areas). I got the results the same day. I went to doctor because of the severe left sided pain that was usually the worst in the mornings. I was told that I needed to see an oncologist and surgeon but first I needed to get a biopsy done so I went for a biopsy of the supraclavicular node which resulted in unsuccessful diagnosis. Then I had a bronchoscopy done which was unsuccessful so I was frustrated, hurting and mad. The oncologist told me that I needed to have my spleen removed so I did. Then 2 weeks later I was told I have sarcoidosis for which I am being treated with prednisone. In the meantime I am fighting with my cancer policy which wants to pay nothing on my bill because it wasn't cancer but all my tests stated active lymphoma until two weeks post-operation, and I have a breakdown of hospital and initial diagnosis. My oncologist told me this is as close to cancer as you can get. I have pain in my right upper region under my breast and my left buttock cheek hurts daily. I'm frustrated because in this day time the right diagnosis should be able to be confirmed through the technological age we are in. My fellow sarcoid friends you are not alone.

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Comment from: WA Girl, 45-54 Female (Patient) Published: January 19

I have been very healthy all of my life. Two years ago, I had pain in my chest. I thought it was heart attack and went to the emergency room. The nurse heard 'rubbing' in my lungs, and said it was pleurisy, an inflammation of the lining of my lungs. Painful, but with ibuprofen, manageable. But two years later, my doctor was baffled by the continued extremely painful pleurisy, and sent me for an x-ray, then a CT scan. There were two huge tumors in my lungs. I cannot tell you my shock. Within weeks, I had surgery to remove one tumor and part of a lung. Diagnosis, sarcoidosis. I was told, at least it's not cancer; yes, but what is sarcoid! The pulmonary doctor put me on 40 mg of prednisone, then 30, and now 10 for a year. Last x-ray showed remaining tumor is 90 percent gone. I should be elated, but I have to say, I'm scared; why do I have sarcoid, what did I breathe, and how can I avoid breathing it again. Will this affect other parts of me? No answers. So I am glad to see others managing sarcoidosis, but I am also left feeling very uneasy. I want to kick this disease, but I don't know how to do it.

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