The Iron Disorders Institute Guide to Hemochromatosis: Symptoms, Relief, and Support for Hemochromatosis Sufferers
H**N
Absolutely A Must-Read for People With Hemocromatosis
I've read pretty much everything on the internet, and all of the major books available on Amazon on this subject. THIS is the best book, and the only one you really need to read.It's incredibly comprehensive, covering all of the aspects of the disorder, symptoms including in more detail than you find on the internet, and importantly, case study after case study so you can see similarities with your own or your loved one's disease pattern.My family has this, including myself. This book gave me the information I needed to go to battle and make sure that I not only fixed it for myself, but can make sure my kids and siblings fix it.What I found most interesting is the info on how it interacts with other diseases. So for each person, they can see how perhaps some of their other health issues might be being influenced, caused, or in some cases helped by their iron overload. Fascinating.The one takeaway is that everyone should have their Ferritin and Iron Saturation % tested at least once every few years, because it's a cheap test and it can avoid death if you catch an iron disorder early. Those with high Ferritin and a saturation over 45% should have genetic testing, which isn't cheap but can nail the diagnosis. And then they should begin giving blood, maybe as frequently as twice a week in the most critical cases. Obviously, under the supervision and direction of an MD. This book will give you the "best practices" for treatment to share and discuss with your physician (you an also find it on the Iron Disorders website for free too) so that both of you can get your care plan right.Anyway, if you have iron issues or have a loved one with iron issues, this is a book you need to buy and read cover to cover. If caught early, it's an easy disease to treat, which is why you don't want to delay or mess around.
L**R
Good
Great info about the hemochromitosis . It will open your eyes to alot of things.
J**.
This is a must read if you have the disorder or have a family member that does.
There is good information on the internet about this disorder but much of it is rather vague or seems to somewhat contradict itself among the different sources. This book is a one stop shop written by the authorities on the subject. It is all of the information you always wanted to know but were to afraid to ask. It is presented well and it is very thorough. Sure some of the information is rather technical but it is a great reference that I find myself going back to over and over. So if you don't get it all on the first read, give it a week and read it again. If you take the time to read this book cover to cover you will probably know much more about the disorder than the majority if the Doctors out there and that is a real blessing and a same at the same time. This disorder is a silent killer. After reading this book, I now have regular "informed" discussions with my Doctor about my situation and treatment plan. It also opened my eyes that not all people have the same classic symptoms that are described elsewhere, many of the minor symptoms presented in the book fit my situation exactly and my Doctor never made the correlation. I am also convinced now that my Grandmother died of this disorder and we never had a clue. The chapter with the case histories from people who have this disorder and their journey trying to work with doctors to get a handle on their health issues was worth the money alone.
M**S
Worth a read
It's entirely possible that this book overpromises.BUT... in a human health environment where doctors routinely overlook iron imbalances, it makes sense to be aware of some of the issues that can be associated with too much iron.I found it interesting and useful.
A**A
the iron disorders institute guide to hemochromatosis
Have learnt so much from this book, and i needed to learn so much as well as alot of the medical professionals in NZ dont seem to know alot about it. I am now 29 years old, and have suffered from chronic fatigue as long as i can remember, i always thought, its just me, its just who i am, my mates always used to laugh and say, "your just born tired". Id be right as rain one minute and full of life and then the next second wanting to sleep for a week, up and down like a yo yo. Then came the nausea, halusinations, shortness of breath, i never smoked, have been a vegetarian since the age of 15, and still was the unfitest out of all us on the team.I went backwards and forwards to doctors over 3 years, the nausea and tiredness was getting so hard to bear i would break down and cry and have to leave work in some cases. Finally one of the doctors said we will get some blood work done on you, my iron levels were high, come back in a few months time and we will see if they go down.From there i got on the internet searching for an answer, getting sicker and sicker, i found hemochromatosis, further investigaions and searches via the internet i asked to see a specialist and asked to be tested for it along with a list of all my symtoms. His comment, you wont have that. He did test for it though after i pushed him to along with a whole list of other things, my test results came back positive for C282Y homozygote, thats the mutation on both chromosomes, he gave me a piece of paper and said here, go get bleed (i had to learn everything out myself, i nearly fainted and vomited after my first pint of blood, no warning given of what to do before or after). I got my sister to get tested also, she is C282Y carrier. It was too late for my dad who i am sure would have had it but i will never know, he died when he was 54 years old of a heart attack and his father also died around the same age of a heart attack. I am in the process of trying to get dads brothers and sisters tested for it too, but its hard, sometimes people (even family) dont want to know.Since finding out over 2 years i have had 14 pints of blood taken to get my iron down to normal levels. My extreme fatigue has eased down to just getting tired every now and then (like any other person), i can do way more without getting too short of breath, the nausea has eased slightly but is still occuring every now and then and my haulicinations have nearly all but gone. If it wasnt for the internet i would have ended up like dad, a short quick life.I have learnt so much form this book, its very hard living in a place where not much is known about a certain disease, but with knowledge you get stonger and can also help other people, maybe even save a few lives, wish i had of found out earlier, i may still have my dad with me instead of him leaving me when i was only 18years old, i guess we will never know.
J**R
Good place to start learning
The information provided was better than the “specialist” I was sent to
T**N
Greatly Informative for Hemochromatosis
Especially helpful to me since I’m recently diagnosed. Hemochromatosis is considered a rare disease and getting correct information from medical providers can be difficult.
G**N
Comprehensive reference on hemochromatosis
Liked: This is a comprehensive description of iron overload disorder and hereditary hemochromatosis. Causes, symptoms and treatments are described in full detail.Disliked: The numerous case studies feel like overkill at times and the references to the Iron Disorders Institute scattered throughout can be toned down.Overall: well worth reading!
B**N
Mandatory Reading
A very good rendition of this condition and treatments for it. I highly recommend it for reading and most especially for anyone suffering this condition!
S**H
don't judge a book by its cover.......
only half way through this book but well worth it so far. i got this book as my husband was diagnosed hemochromatosis many years ago but as he was never ill never thought i would need to know more but as it got worse and it started affecting us as well as him i needed a more in depth look.
J**G
Loads of iron information.
Very informative.
F**A
very useful - quite detailed
very useful and informative - don't scare yourself with all the information.It covers all levels of condition but is well written
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