In December 2011 my co-author and I published A Guide for Adults with Hip Dysplasia, a world-first book for adults with this condition. We've just sold over 500 copies, and it continues to help patients all around the world.
This week I've started work on a new medical book, on neurosarcoidosis.
Anyway. It will have a few chapters on the current understanding of this rare disease (my estimates based on the research papers is there are only around 140,000 – 280,000 people with this disease in the whole world), how it's diagnosed and treated, and some chapters on proactive strategies for living with it. The second part of the book will be collected patients' experiences, arranged by topic.
ETA: Submissions from patients have now closed.