Porphyria Books

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.

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!

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.

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.

This book is recommended by me all the time. I wish I had found it long ago, but better late than never. When my husband found this book he paid a lot for it and I thought, "It's not going to help." I was so wrong! This book is excellent and researched to the max. I wish the authors would do an update!

Dr. Michael Moore has MD has done a splendid job in his comprehensive overview of a very complex and unknown disease. I have found myself referring to his book often as I travel my journey of porphyria as an AIP patient. Porphyria is a greatly undiagnosed and underdiagnosed disease. Dr. Moore has taken a complex disorder and written his book in such a way that patients can better understand their disorder and at the same time be able to share that information with others who are completely unfamiliar with porphyria including many primary care physicians.An excellent resource and reference book!

In The Shadow Of The Throne: The Lady Arbella Stuart by historical biographer Ruth Norrington offers the reader an unusually insightful portrait of one of England's most overlooked princesses. Once the favored heir to the throne of Elizabeth I, the Lady Arbella Stuart was descended from Henry VII through his eldest daughter Margaret Tudor and was the niece of Mary Queen of Scots. But her life was marred by illness, and modern opinion is that she suffered from the hereditary disease of porphyria - a "vampire sickness" that made those afflicted horrendously sensitive to sunlight, among other blights. Her cousin King James I opposed her marriage to William Seymour, and eventually incarcerated her in the Tower of London, where Lady Arbella Stuart died from it in 1615. A fascinating saga of British royal family history, extensively researched and including numerous letters and correspondence, In The Shadow Of The Throne is enthusiastically recommended reading for anyone with an interest in British royal history in general, and the life and times of the doomed Lady Arbella Stuart in particular.

More like 4-1/2 stars, but close.

Seamy seamy seamy. Ensnared me while it revolted me. I personally didn't find it terribly erotic, but I can see how some might, if you've a taste for the macabre, and for manipulation and revenge.

Graphic discriptions of unwashed Victorian London, along with startling invention and an unforseen, though somehow very right conclusion. I actually stopped about 50 pages before the end and left it awhile, because I didn't want it to be over too soon... a very high tribute from me!

I think this book is a must read for anyone with porphyria or those who suspect they may have it. Desiree Lyons does a terrific job of describing her trials and tribulations of getting diagnosed. Which is a problem for so many. It certainly is difficult to be ill with a disease that only tests properly for such a short time, though the effects of a porph attack can haunt one for weeks if not months. I bought this book for my soon to be ex doctor in hopes that she would read it. Judging by her lack of action during my last porph attack it's obvious she didn't! I'm not particularly religious so that section toward the back was of little interest to me. But overall a MUCH needed book on porphyria, I wish every healthcare professional as well as patients would read it.

As a porphyria patient, I am forever on the lookout for new books about the disease. Here's a good one, folks!

Ms. Lyon Howe's account of her struggles with AIP is honest and touching. Her writing style is very laid back and conversational. The reader almost feels as if she or he is sitting around the kitchen table with Lyon Howe, listening to her spin stories. The disadvantage to this colloquial style is a tendency to ramble and jump from topic to topic. However disorganized things can get, there's still a good tale to be read here.

DLH attempts to combine hard factual information with a first-person account of life with AIP. Porphyrics will probably find themselves nodding in agreement and identification as they read: "hey, my doctor ignored me, too!" "Wow, I had those symptoms too!" People without porphyria might understand the condition a bit better after reading about Lyon Howe's ordeal. Her descriptions of her personal experience with AIP and life in and out of the hospital are vivid and frank. She makes it clear that porphyria is neither lollipops and sunshine nor some cliched vampire curse.

If you're looking for a good first-person account of porphyria to balance out all the dry prose in the medical journals, I'd heartily recommend this book.

Desiree Lyon Howe, co-founder and Executive Director of the American Porphyria Foundation, writes her book based on a life-time of experience and from her heart. She openly shares her triumphs and challenges with the disease. The writing brings the reader inside and shares the difficulties facing a patient with porphyria. Along with her personal story she offers scientific facts, experiences shared with her by other porphyria patients and detailed information for obtaining a diagnosis and treatment. The reader comes away with extensive and insightful knowledge of a rare disorder. Desiree lights a pathway to the complexities of confronting and dealing with porphyria. Thanks to her for sharing her life and knowledge.

this book was excellent. i applaud the bravery and fortitude shown by tammy and indeed all her family. her friend sharon is also to be commended. if we all had friends like her the world would be a better place. i knew nothing of this disease before reading this book but feel i have a little understanding now.

This book was very interesting. The author tells her own story in her own way. Amazing.

The book did not hold my attention, but I really liked Sharon. I would like to met her someday. I hope she reads this and writes an online review about herself. I sent her an email, but did not get a responce. Come on Sharon the people want to hear more from you.

I have recieved many e-mails from readers of the book, but I have not wrote any of you because this is not my book. I am glad that you liked me, but that is because of the Author not me.You said you wanted to hear more about me, Well I am very busy with remodeling the inside of my house. It is the first time I have ever been able to remodel, because I have always been a military wife and I was always on the move. Now I can afford to do what I have always wanted to do (remodel)My husband and children say I am very good at it.When I am not working on the house I am traveling. I just got back from N.C.With my friend and I had a ball. I went and saw the bilmore house it has 260 rooms. No I didn't get to see all of them. Well that is a little bit about me. I hope you go on reading the book and keep learning about new disease's.

As one involved in the porphyria community, I was eager to read this book. There isn't a lot of information out there for us, after all!

Evans writes in a matter-of-fact, direct fashion. The prose isn't scintillating, but the story moves along at a brisk pace. I could easily identify with many of the author's experiences: the endless testing; the blinding pain; the dismissive doctors; the despair of knowing *something* is wrong, but not being able to pinpoint the cause.

I did question a lot of the material, however. For one thing, there have been porphyria foundations in both the USA and Canada since the 1980s. There have also been more aggressive treatment options and banned drug lists since the 1970s. Also, a lot of Evans' descriptions of her attacks were odd--for instance, the way her photosensitvity manifested itself. Either Evans had completely incompetent doctors, or something's missing here.

I also wondered why Evans kept playing up the whole "Vampire Disease" and "curse" terminology. It's certainly sensational, but that's about it. It would have been better if she had explained the illness a little more thoroughly. The reader never really gets a clear picture of the actual scientific facts of porphyria.

On a technical note, who edited this book? The grammar and punctuation typos and misused words made me grit my teeth. How did the proofreader at this press overlook such errors as "hoards of people" (it should be "hordes") and "dirth" (a misspelling of "dearth")? Call me a nitpicker, but these things do detract from the overall quality of the book.

I would recommend this book to other porphyria patients, but I am not sure I would extend the same endorsement to the general public. I do not feel this book really provides a full and accurate depiction of a typical case.