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A Rare Lung Disease: Fibrosing Mediastinitis (FM)

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My name is Gina Starks. I am 29 years old and married with a two-year-old son. I also happen to be battling a very rare and life threatening lung disease. Fibrosing Mediastinitis (FM). I developed this disease as a result of living in the Midwest. This disease has taken over my right lung and rendered it useless. Currently it is working on overtaking the left lung. Essentially, my body is slowly suffocating itself.I started this lens because I am trying to raise awareness of this disease so that some research may be started. Currently there is no research and no known treatment. This disease is unknown.I refuse to let FM take its victims away from family and friends!

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What is FM?
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Comments, questions or awareness raising...
FM links

What is FM?

FM is a reaction to the inhalation of a fungus (Histoplasmosis) that is in the soil of the Ohio-Mississippi River Valley Area and is found worldwide. Currently there are only 300-400 people in the U.S. diagnosed with FM. Many others have FM and are unaware that it is taking over vital vessels and airways in and around the heart and lungs. FM is inoperable and causes many life threatening complications, including repeated stent placements and angioplasty procedures, which are potentially life threatening as well. FM is diagnosed in people that are in the late 20's to mid 40's. It is hard to diagnose due to the age of the otherwise healthy patients. Doctors are not aware of FM and therefore do not know they need to test for it. The only diagnostic procedure that indicates FM's presence is a CT or MRI exam. Doctors do not generally order CT's and MRI's for young patients that present with the broad range of symptoms FM creates: shortness of breath, chest pain, blood streaked sputum, etc.
Anyone can inhale this fungus if they live in or visit the region.

The National Institute of Health and the Center for Disease Control do not recognize FM as a disease. Not even the American Lung Association has information regarding FM. This fact makes it extremely difficult for those affected with FM to file and receive necessary disability and more importantly, it is difficult to find answers without research or knowledge...

Comments, questions or awareness raising ideas...

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Fibrosing Mediastinitis

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http://marchmoon.net/fm

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