Over the past 10 years Jean and I have dealt with a rare and challenging neurological condition, pure autonomic failure (PAF). Together we have managed complex symptoms and interrelated problems – sometimes with help from healthcare providers and sometimes on our own. Based largely on this experience and extensive research we have written a concise guide titled Understanding Pure Autonomic Failure/PAF: A Patient Guide.
Rare = estimated 1,000-20,000 cases in the U.S.
Actionable information on PAF is rare. Few doctors or nurses are knowledgeable, and patient education resources are nonexistent. Through this guidebook we first seek to inform people with PAF on self-care. A second purpose is to give people with PAF a means of explaining to family and friends what having this condition means.
The guidebook is short – 48 pages, including four images of PAF-related art. Cost is $9.61 on Amazon. It is organized as follows:
- Daily management – all the things that must be done every day.
“Crazy Heart” – Jean Cacicedo
- Definitions and medications.
- A complete guide to managing the illness.
- Notes on the lived experience.
The book includes four reproductions of Jean’s art and our best wishes on your journey.