Porphyria [Hardcover]

Tammy Evans (Author)

Book Description

Publication Date: May 15, 1997

A beautiful woman turned into creature of the night by a family curse.

Editorial Reviews

Review

As a child, Tammy Evans lived in a house sin darkness with a mother who locked herself away for weeks at a time. Tammy was isolated, lonely, and confused. It was not until her grandmother's funeral, when Tammy fell to the ground unconscious and delirious, her skin sizzling in the sunlight, that she found out her family's dreaded secret. They were afflicted with porphyria, also known as the "vampire disease", and she had inherited the curse. Like her mother, Tammy was condemned to frightening spells, subjecting her to bizarre symptoms at any time and in any place. Porphyria is the astonishing story of a young woman who must endure the days her complexion turns eerily waxy and the suffering caused by visual distortions, abrupt changes of personality, and an inability to tolerate sunlight. Prophryia tells of her courageous struggle to live a normal life and find lasting love as well as her search to find treatment for a diseases that is too rare to compete for government research dollars. Exceptionally well written, Porphyria is a testament to Tammy's passionate commitment to end the physical curse, terrible history, and modern stigma of the "vampire disease", and to ensure a hopeful future for its growing list of victims. -- Midwest Book Review

Product Details

• Hardcover: 200 pages
• Publisher: New Horizon Press (May 15, 1997)
• Language: English
• ISBN-10: 0882821563
• ISBN-13: 978-0882821566
• Product Dimensions: 9.1 x 6.1 x 1.3 inches
• Shipping Weight: 1.2 pounds
• Average Customer Review: 3.4 out of 5 stars  See all reviews (20 customer reviews)
• Amazon Best Sellers Rank: #2,602,006 in Books (See Top 100 in Books)

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Customer Reviews

Most Helpful Customer Reviews

11 of 12 people found the following review helpful:

5.0 out of 5 stars Getting the terminology Porphyria into use is valuable., November 14, 1998

By A Customer

This review is from: Porphyria (Hardcover)

Porphyria is for the most part an unknown disease. Whether people believe this porphyria account or not, just the fact that the term "porphyria" is the key focus, makes relatively unknown word more known. And it is important to note that Tammy's form of porphyria is only one form and type. There are at least eight, and even within these eight forms there are wide variances among the symptoms and the severity that patients experience. The only way for people to come to realize porphyria exists is if someone who has firsthand experience has the guts and fortitude to share it with others. I have AIP which is the hepatic acute type without the skin manifestations for which I thank God that I do not have. Yet I can appreciate the rest of the symptoms Tammy has endured. People including emergency room doctors look at you like you are a nut case or something when you tell them you have severe abdominal pain, muscle weakness, nausea, and yet standard lab tests do not show anything...which is very standard for the porphyrias. Some patients have had their appendix, or gallblader, or both out needlesly because doctors thought that was the source of pain. And for it being so rare, I don't think so. Some medical tests say one in 100,000 population, but I live in a community of 50,000 and there happen to be 14 in my support group which includes a 50 mile surrounding area. And none of us are related. If we look at other of our family members not in the group, we know of five more that could be diagnosed and have not at this point, including parents from which the patients have inherited this disease. Good work Tammy, if you have opened some eyes, it is well worth the effort. If they don't believe it, tough, because at least they know about it, and some day we will be a "known" disease!

6 of 6 people found the following review helpful:

5.0 out of 5 stars A serious reminder for physicians, January 8, 1998

By A Customer

This review is from: Porphyria (Hardcover)

Having worked as a physician in a department at a University Hospital in Germany where Porphyria patients are treated, I am very grateful about the book "Porphyria" by Tammy Evans. In my opinion there is no better way in informing an ignorant world about a rare and torment disease, in describing all those symptoms und suffering porphyria patients may go through in there long way of beeing mis-/or undiagnosed. Physicians have a hard time to consider the diagnosis of this rare disease, therefore this book is indeed written to become a serious reminder for physicians.

2 of 2 people found the following review helpful:

5.0 out of 5 stars GOOD BOOK...I SHOULD KNOW......., July 14, 1998

By A Customer

This review is from: Porphyria (Hardcover)

I have waited a long time to review this book. I wanted to wait, because I had to see how the puplic would respond. Tammy worked hard and long hours to put this book together, and she never gave up. Anyone who has Porphyria should read this book.Why should I know? Because I was there. I will back Tammy on this book. If you do not agree with Tammy Evans, please do not use me as and excuse to be angry with her. Again...This is a good book, please educate yourselfs on rare diseases, they are out there. I have seen it with my own eyes. Good work Tammy Evans.