Customer Reviews

Porphyria

5 star:		(10)
4 star:		(1)
3 star:		(1)
2 star:		(3)
1 star:		(5)

 

 

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!

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.

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.

SEVERAL IN OUR OFFICE HAVE NOW READ "PORPHYRIA" BY TAMMY EVANS. THIS BOOK GIVES GREAT INSITE TO A DISEASE THAT IS UNHEARD OF BY THE GENERAL PUBLIC AS WELL AS MUCH OF THE MEDICAL COMMUNITY. THE AUTHOR, OBVIOUSLY, IS TRYING TO REACH SOCIETY WITH INFORMATION ON THIS ILLNESS AND ENCOURAGE DOCTORS TO TEST FOR PORPHYRIA - TO HAVE THEM ADMIT THE DISEASE EXISTS AND NEEDS RESEARCH. WE ALL ENJOYED THIS BOOK, A GREAT STORY AND PACKED WITH INFORMATION. THANKS TO THE AUTHOR FOR WRITING ON THIS SUBJECT - IT WAS EASY TO READ AND KEPT OUR ATTENTION ALL THE WAY THROUGH.

I read this book over a year ago, I must say, at the time I did not read all of it. I only Read the parts I was in.Tammy Evans does have Porphyria and yes it is a real disease. To the reader that said she didn't want people to think her feet was going to fall off, I think she better go back and read the book again. Tammy and myself and her daughter walked long hours and it was the hardest thing I have ever done. So you can only wonder how hard it was on someone with Porphyria.I hope Tammy educates as many people as she can. To Tammy Evans, GOOD JOB...I know Tammy can go on with her life now, and so can I.

I too, have copro-porphyria. I am surprised that anyone who truly knew about or is a victim of this disease would not realize the service this writter has done for the medical community in making them aware that the disease exists and that they should be testing for it when they believe it is a possible diagnosis. I believe there are alot more people with various types of Porphyria that need to be diagnosed and helped.

The doctor form Germany really said it all.

Thank you Tammy Evans for having the courage to write a book that may very well save lives by educating medical professionals.

This book contains an amazing tale of courage and determination. I had to read it cover to cover. I would recommend it to any reader interested in life stories, medicine, or just as a great read. Well written well researched and very eye-open- ing. Best of luck to this author and look forward to seeing more works from her.

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.

I have Variegate Porphyria. When I was first diagnosed I went to the library (small town Nebraska) and the only book I found with any information at all was the Tammy Evans Vampire Disease book. I read the book, I cried, I thought my feet were going to fall off, I thought, "I can still go outside though!" I felt very deceived by this book. I was mad! I was REALLY mad. my heart broke for this "poor woman" and all her suffering. Then I got some education... I have since discovered that YES, Porphyrics are an ignored species. We are not holders of a glamour disease. There are no celebrities with Porphryia. And my daughter more than likely (although testing latent ) has Variegate Porphyria too. For these reasons ONLY, I would recommend the book, just so the disease itself gets some press time! But when a newly diagnosed person asks me for a recommendation about available information, I send them to the webpages of other Porphyrics, not this book. They will eventually find iton their own. I don't want them to think their feet are going to fall off, or maybe their mothers were actually hiding in the attic in a coffin all their young years, or there backs will ooze scrud out all over them for no particular reason. And I certainly wouldn't recommend going for a 3 day walk OUTSIDE, I wouldn't even recommend a 3 minute walk outside!The disease itself manifests in strange ways...Not the exact same way for any Porphyric, Similarities exist, but we are all diferent! In my opinion the book needed to be researched and then WELL written instead of making the disease look and sound like a freak show for money! I will repeat myself though and say, "Any press on Porphyria is good.&quo

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.