Customer Reviews

Porphyria: The Unknown Disease

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I was given the term "porphyria" over the phone from the specialist who did not explain anything except told me to get this book and read it cover from cover. When the book arrived I had all kinds of questions which were covered in simple to understand language for the ordinary patient. No mumbo-jumbo of medical terms. When I went back to see the specialists we then were able to dialogue because we both had a basis of information as a background. Since then I have ordered books for co-workers, family members and my pastor so they can understand what I have and understand that it is not a psychological disease.

This is not a heavy medical text or full of biochemical terms, but written in everyday layman's English, and something a clinician can share with a patient knowing that the book will cover all aspects of the acute hepatic form from description, medical history, drugs, nutrition, to family interpersonal relations to the wonderful case histories of case subjects.

No other porphyria book can be grasped as well as this one.
This book was written by a patient with a publishing house offering the book to the general public as part of the non-profit charitable Porphyria Educational Services, a group that gives
educational support for patients with this disease.

Unsafe Drug lists in this box and all other information found
in the text is regularly updated on a website of the same name,
so your handbook is always up-to-date.

I have freely shared this with my patients which they could read and share with family members. It was most helpful for them as well as saving costly time having to be spent in the clinic.

Luckily I ran across this very basic easy-to-read medical handbook designed for patients. Not the ordinary scientific approach to a complex subject, but written that any patient can understand the basis of their complex disease. It is a "keeper" and one that I know I will be sharingwith medical students and patients alike.

This is a very handy book for the clinician to deal with the unusually type of disease. Porphyria is not a daily household word and so finding any information is hard-to-come-by and this handy book is authentic, informational and easy to understand and could only be written by someone who deals with the disease on a daily basis. I have recommended it for patients now that I have read it. It is the best there is out there on the subject.

I first came here and found the book unavailable and so wanted it and found it from the publisher. The book is easy to read,
understandable, factual, and has a great bibliography where a person can go for more detailed reading. One of a kind!

I keep buying extra copies of this book, it's so well-written. I give it to doctors, to friends, to anyone I can to inform them about porphyria. It's easy enough reading without being simplistic, the perfect balance of medical information along with case studies and resource links. I really can't thank Diana enough for supplying the Porphyria community with this text. I wish it was mandatory reading for doctors in every hospital in this country.

A comprehensive work on this disease written in an easy to understand fashion. I was fascinated with the case histories. I was excited by getting a listing of the unsafe drugs in a format where one can cross check generic and trade names. A very valuable resource for medical/surgurical nurses to have as a reference when having a porph patient.

TO LEARN ABOUT A NEW ILLNESS IS A EDUCATION. IT IS VERY BRAVE, NOT ONLY TO WRITE ABOUT THIS ILLNESS, BUT TO TALK OPENLY. I KNOW SOMEONE WHO HAS THIS ILLNESS BUT, SHE DOES NOT THINK LIKE THE REST OF US. SHE ALWAYS THINKS SOMEONE IS AFTER HER. I THINK YOU FOR EDUCATING ME EVEN FURTHER ON THIS ILLNESS.

GET THE BOOK !!! Don't waste your time and energy scouring the net for information, this book has it all (and then some). Includes the most comprehensive drug list ever found. I took the book to the hospital when I was there for a week. All the nurses, doctors and specialists that came to my room were very interested and impressed with the book. And it was nice to have one solid reference book at my bedside to insure my safety and answer any questions that I (and my doctors) might have. An invaluable resource.

As an emergency room staff physician I was very happy to obtain a copy of this remarkable book. The drug list is in itself worth its weight in gold! A great handy resource to flip through to be able to update self in minutes when a porphyric patient arrives in the ER.