- CASE FILE
I have Fibrosing Mediastinitis, an extremely rare terminal disease. Diagnosed December 2013. My lungs are hardening like cement.
ABOUT THIS CASE FILE
My lungs are hardening with a fibrosising tissue that also effects my heart. One lung is completely encased. It has started on my other lung and my heart. I have severe hemoptysis and shortness of breath. I can not lay down. I sleep in an upright position in a hospital bed to help me breath and ease the coughing. My chest is in constant pain. I am on disability. I don’t leave my house often. Mainly when necessary. I do take limited pain medicine but I try not to. There is no treatment or cure that any of my doctors know of. I have 2 pulmonary doctors and a cardiologist that follow me very closely. I would love to find a treatment or cure for myself and the approximately 500 others that have this disease.