The Patient's Guide to Neurosarcoidosis

This book is the world’s first book written for people with the rare autoimmune disease, neurosarcoidosis. I wrote it because I have the disease, and wanted to understand it better, and help other sufferers. I was frustrated by the lack of information for neurosarc patients, and decided to collect other patients' experiences, and whatever medical information I could discover. The text has been reviewed by an immunologist and a neurologist.

It is available as both a paperback and a PDF ebook from Lulu:

The first part of the book contains medical information about neurosarcoidosis, diagnosis and treatment, as well as information on coping with the disease. The second part of the book contains experience stories from ten patients from around the world.

The PDF ebook has an interactive table of contents and index, and external links to the websites mentioned in the book.


I just finished 'The Patient’s Guide to NeuroSarcoidosis'. I want to thank Denise for writing such an informative book about neurosarc while putting into beautiful, concise words what patients and their families go thru. I also want to thank each patient who shared their personal experience with the disease. My husband was diagnosed with sarcoidosis in 2010, neurosarc was suspected but not confirmed until 2012. It has been quite a journey. This book would definitely be helpful for patients and loved ones who navigate the journey together.
— Marty Wainwright (Lulu, Feb 2015)

This was a very informative book! I was recently diagnosed with Neurosarcoidosis, and I wanted to read about it from a patient's perspective rather than a clinical perspective. It helped me to process all that was going on with me and be an advocate for myself. Moving forward my health care choices will be informed.
— Alda M. Blakeney (Amazon, June 2019)

Publisher: Sutherland Studios
ISBN: 978-0-9872152-5-3
Published: 2015
168 pages
Includes glossary, cited references, index