Porphyria: The Woman Who Has "The Vampire Disease"
Review by Lenore B. Weinstein, submitted on 6-Oct-2002

Porphyria: The Woman Who Has "The Vampire Disease" (A True Story), by Tammy Evans. Far Hills, NJ: New Horizon Press; 1997. 304 pages, hardcover, $22.95.

Porphyria: The Woman Who Has "The Vampire Disease" is about the author's, Tammy Evans', mission to promote awareness of her disease, porphyria, an enzyme deficiency disorder. The book is written for the public, so that all readers, laypersons as well as medical personnel, can be educated about porphyria while developing compassion and understanding for its victims.

The book begins with the author's note attesting to the authenticity of the experiences and history written about in the book. The 24 chapters of the book are an autobiographic recounting of the author's life from age 5 and on when she first recognized her mother's illness. At age 12, she first experienced attacks of unknown origin. Her lonely adolescence led into her first marriage, where she encountered domestic violence due to her sickness, through the birth of her four children, divorce, financial struggles, and remarriage. She tells of her continual, worsening attacks and the struggle to identify her illness, the negative test results and lack of answers from the medical community, and finally, her diagnosis of hereditary coproporphyria (HCP), which is incurable and virtually untreatable. The author relates her "call to action" which results in her campaign for the public's awareness of the disease. Her journey takes her from her creation of The Porphyria Education and Awareness Association to media interviews that culminate with her "Trek for Truth," the 120-mile walk that she, her afflicted daughter, and a friend undertook over 7 days to heighten awareness of the disease that is detailed in the book's last eight chapters.

The epilogue is about a call from a Gulf War veteran describing his symptoms to the author who looks at the possible relationship of her illness to that the Gulf War veterans were experiencing. The four appendices include research articles about the link between the Gulf War Syndrome and health effects Vietnam veterans experienced from Agent Orange and porphyria.

The text is straightforward black and white print with only enlarged, bold, chapter titles to break it up. There are no pictures or tables in the book but there is a picture on the front and back book jacket cover showing the victim covering her mouth and one side of her face.

From the title and cover photo, one might get the impression that this is a horror, or science fiction story, and one that could grace the cover of a tabloid newspaper. While this may attract some readers, others might feel repulsed. However, from the opening line, the reader's attention is immediately riveted to the point that one does not want to put it down. The book is written in the first person, allowing the reader to feel as if the author is personally telling you her story. It is written in lay terms, and is easily and quickly read and understood. The book would be successful as fiction; it is even more dramatic because of its reality.

This book brings porphyria, a little known, rarely diagnosed disease, to the public domain and educates its readers about its physiological and psychological components. While that in itself is an accomplishment, if the research continues to identify a relationship to the Gulf War Syndrome and illness from Agent Orange, it has even greater significance for the medical community.

COPYRIGHT 1998 Aspen Publishers, Inc.