Porphyria Book

Porphyria, A Lyon's Share of Trouble an Update

by Desiree Lyon Howe


If you read the first edition, you will want to read what has happened over the past ten years.  

In this remarkable book, Desiree offers an information rich discussion of the porphyrias, a group of rare metabolic diseases. She also discusses her own case, as well as those of many other patients whom she has helped over the past thirty-five years as co-founder and Executive Director of the American Porphyria Foundation.

Desiree embraces the challenges of porphyria with courage and humor and writes about them in an open and honest dialogue. After thirty-five years as a medical writer, she has delineated the new and exciting developments in the treatments of all the porphyrias, offering explanations about this complicated group of diseases in a readable manner.

Every patient and family member will derive tremendous insight and guidance from Desiree’s experience, as well as vital information to aid in navigating the complexities involved in confronting and surmounting the porphyrias.


Available now in Digital form on Amazon.