What is DERAILED?
DERAILED is a book about living with a rare disease called fibrosing mediastinitis.
The book’s goal is to provide a better understanding of this disease, its causes, effects, and treatments.
Most people who receive this diagnosis experience frustration in a lack of information. It is my hope that DERAILED will provider a clearer understanding for healthcare providers, patients, and families dealing with FM.
For information about obtaining copies of the book, email: firstname.lastname@example.org or visit
We got our books today! I cannot express to you how so very grateful we are for you putting this book together. Not to glorify this disease but the book puts such a reality on it. I have family and friends who are anxious to read it. Tami again I can say thank you enough. I must also admit when I opened them I cried. I just so wish I could send you a chunk of money or on some awesome vacation or just something to show my appreciation.
I did see where you can get them off of Amazon and I ordered a couple. After the holidays I want to order some more.
My wife and I love you so much. You are our little FM angel!!!!!
David and Sherry Martin
“You have Fibrosing Mediastinitis.”
When I heard these words for the first time I had no idea what was being said. I had never heard of Fibrosing Mediastinitis. I had been a critical care and emergency room nurse for over 20 years when I was diagnosed and was completely taken aback. The physicians who were taking care of me at the time did not offer much of an explanation, nor did they offer much hope.
Most people who are given this diagnosis feel as if someone snapped off the lights, leaving them floundering and bewildered. Fear and frustration are common. We fear the unknown and we are frustrated at the lack of information and medical resources. There are thousands and thousands of rare diseases. Everyone who is affected by a rare disease wants to have their condition recognized. This book focuses on one rare disease: Fibrosing Mediastinitis. It is my hope that this book can help you see some light again.
What can be done about it?