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Tuesday, May 3, 2016
I was Diagnosed with Eosinophilic Granuloma
I was just diagnosed with eosinophilic granuloma and possibly pulmonary fibrosis.
The first Pulmonologist at Deborah did not know about my disease. I just saw another Pulmonologist and he told me to quit smoking and see if I am better in three months. How come they can`t tell me if I have pulmonary fibrosis? They suspect it.
I am 35 and I have smoked heavily since in my mom’s womb. I started smoking at 15 and was a two pack a day smoker. I had pneumothorax and then a lung biopsy. Do you know an expert in this disease (eos)?
Eosinophilic granuloma is one term used for the disease Langerhan's cell histiocytosis. This is a condition when a cell called the Langerhan's cell, proliferate and build up in the lung. In most situations, Langerhan's cell histiocytosis is due to cigarette smoking and it appears that there is a substance in cigarette smoke that turns on the Langerhan's cells to multiply.
Although most patients have pure lung involvement, in some cases, the Langerhan's cells can build up in other parts of the body causing damage to other organs. In early stages, the disease can often be controlled simply by stopping smoking. In more advanced cases, the lungs can become scarred, even to the point of requiring lung transplant.
For patients who do not improve with smoking cessation, sometimes chemotherapy medications are tried but they often do not work.
To find an expert in this condition, a good place to start is a medical center that has a specialized interstitial lung disease clinic or program.
James N Allen, Jr, MD
Clinical Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University