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: lottofreak55, 55-64 Female (Patient) Published: October 15

I am a 57 Year old female. I had a cough that wouldn't go away. Doctor had me change my medicines, but it didn't help. He sent me for a CT scan of the head and chest. With these results doctor told me and my husband that I had cancer or Hodgkin's lymphoma. Steroids seemed to make the cough go away. I also had a bad sinus infection. I had surgery for a biopsy of my lung and it was determined it was sarcoidosis. Then a few months later I had the sinus surgery. Here I am again with the cough and achy knees and I cannot taste or smell anything. I begged my doctor to put me back on steroids to help so I could taste and smell again. I am hoping I can find a doctor out there that knows about sarcoidosis and not dismiss it as a nothing disease.

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Comment from: leanndwalters, 19-24 Female (Caregiver) Published: November 06

My daughter had a baby boy by C-section in May, she is 21 years old. She had severe pain a month afterwards and went to the emergency room (ER). They found lesions on her spleen and she was referred to an oncologist. The oncologist did a PET scan and diagnosed her with stage 3 to 4 lymphoma. They did biopsy of lymphoid tissue in her lungs and found out it was sarcoidosis. They sent her to a pulmonary doctor who did nothing and now a rheumatologist who started her on 40 mg of prednisone for the past 8 weeks. Prednisone has done nothing for her and the disease is now in her liver. I don't know what to do.

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