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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Comment from: sandy, 55-64 Female (Patient) Published: May 05

I was introduce to sarcoidosis in 2013, it runs in my family. I had a cough for a whole year and it wouldn't go away. So they removed one of the lymph nodes that was swollen, and sent it to the lab and that's when they said it was sarcoidosis instead of cancer. It's hard to deal with it because it started in my lungs, now it's all over liver everywhere, now I developed depression, and a heart disease, and it caused me to stop working after working for 15 years. I have chronic back and leg pains, shortness of breath and a series of medicines.

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Comment from: 35-44 Female (Patient) Published: August 18

I believe I have had sarcoid since the beginning of last year, I had the dry hacking cough which took my breath away at times and was told it was a respiratory infection, night sweats and fatigue which I put down to menopause, and chest pain that landed me at the cardiologist where I was told that I was fine. This year I had pain in my chest that I could not ignore and I presented myself to Accident and Emergency where I was cleared of heart problems. They did a routine x-ray which showed shadowing in my right hilar region. My CT showed I had enlarged lymph nodes and I was treated with antibiotics for pneumonia and was to have a follow up scan in 8 weeks. While this was happening an ultrasound of my breast showed a suspicious lesion so I was sent to a surgeon. He accumulated all my history (which includes renal cancer in 1999) and sent me for a PET. The scan lit up like a Christmas tree. I was seeing an oncologist that same day who told me I have lung cancer, lymphoma or sarcoidosis and referred me to a respiratory clinic where a bronchoscope was performed and revealed I had sarcoid. I was told it is a boring disease I will have it for 1 to 30 years; it can leave at any time that most people don't even know they have it. I have had kidney and liver function tests, ECG, I have to see a cardiologist to be monitored, I have seen an eye specialist I get told everything is ok, but I don't think so. I am fatigued, I have pain in my chest, under my arms, my groin, around my rib cage, neck, and just recently my wrists hurt, and my ankles hurt I get regular headaches; not every day but since my diagnosis at the end of April I have had maybe 2 weeks pain free. Some days I get by, pain isn't intense, but some days are extremely painful. Now in my treatment plan they won't let me have steroid treatment at the moment (maybe I don't need it, I don't know) or anti-inflammatory medications because of my one kidney as these medications break up in the kidney. So at present I take Mersyndol for not so bad pain and Endone for the extreme pain. I feel that I have lost my quality of life, I feel pathetic and I feel that the medical field sweeps this disease under the carpet. My best wishes to other sarcoid patients that suffer this horrible disease (apparently boring disease according to the oncologist I have seen). Please keep sharing stories on sarcoidosis as it seems everyone suffers differently and it helps people to know they aren't alone.

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