best resources for learning about hemochromatosis

Heads up! I’m NOT a doctor or nutritionist. I’m not giving you any medical advice or dietary recommendations here. Check with your doctor before you make any changes to your lifestyle, diet, or supplement regimen.

I dare you to ask your neighbor, coworker, yoga teacher, or the person next to you in line at the grocery store if they can tell you what hemochromatosis is. Chances are, they haven't heard of it, and they'll ask you how to pronounce it a few times ... "he-mo-chro-ma-to-sis!" (Not even Grey's Anatomy could get the pronunciation right!)

Most of us have heard about how important iron is for our diet. Just go on the internet and type in the words “diet” and “iron” - you’ll find countless articles on the dangers of low iron levels and iron-deficiency anemia, with titles like "21 Signs of Iron Deficiency You Need to Know About" and "10 Reasons Why You Might Need Iron Supplements."

But can you think of a time when you were cautioned against the other end of the spectrum - having too much iron? I know I can't.

Iron is a trace element - meaning we need "traces" of it. While being deficient in a trace element will make us feel sick, too much is also quite dangerous.

Society's misunderstanding of iron's role in our diet plays out into the reason why so many people don't get diagnosed with hemochromatosis when they should. Iron overload simply isn’t on anybody's mind.

Interestingly, many people go years, if not their entire life, without knowing something as simple as how much iron is in their blood. Too much? Just the right amount? Not enough? Finding the answer to that question can mean the difference between health and sickness, yet many people are under the impression that they've got to eat lots of iron to stay healthy, now and forever. For the 1-in-8 people who carry the hemochromatosis gene (and the 16 million Americans that have some degree of iron overload), that mindset may not be beneficial.

Unsurprisingly, finding high quality resources on iron overload can feel frustrating - there aren't many. I personally felt really annoyed when I was first diagnosed because so many websites assumed anyone with hemochromatosis was either a man or a postmenopausal woman. When I FINALLY stumbled on this article and then this one and then this one..I felt so relieved.

That’s why I've created this resource list for you. After probing the internet for articles, books, scientific research, opinions, guidelines, tools, and basically anything that's got the word "hemochromatosis" in it, I've rounded up the ones that I found most helpful. Whether you're newly diagnosed or a seasoned pro in the world of hemochromatosis, I hope this content can assist you!

And if I missed anything that YOU think should be on this list, let me know!

ARTICLES

The Iron in Our Blood that Keeps and Kills Us - The Atlantic

Iron: The Double Edged Mineral - HuffPost

A Host of Ills When Iron's Out of Balance - The New York Times

The Most Common Genetic Disease in the Western World is Still Poorly Understood - The Conversation

Bleed me: why excess iron can be dangerous - The Conversation

Medical Mystery: Alcoholism didn’t cause man’s diabetes and cirrhosis - Washington Post

'I was in excruciating pain from excess iron' - BBC

Haemochromatosis 'bigger threat than we thought' - BBC

Haemochromatosis: 'Celtic curse' gene can cause major organ damage - BBC

Busy Father Finds Way Forward Despite Hemochromatosis - Mayo Clinic

Rare Condition Means Another Dry St. Patrick's Day - ABC News

Exhausted with unexplained pain? You could have haemochromatosis - IMAGE

 

GUIDES & CHEAT SHEETS

Understanding Hemochromatosis written by John Hopkins Medicine

Hemochromatosis Information Kit for Newbies written by the Iron Disorders Institute

The Bronze Killer: Haemochromatosis and Diabetes from Australian Diabetes Educator

Healthy Eating and Haemochromatosis from The Haemochromatosis Society

Nutrition Support for Hemochromatosis Therapy written by Sanford Medical Center

Diet Recommendations for Hemochromatosis written by the Iron Disorders Institute

Phlebotomy Guidelines written by the Iron Disorders Institute

 

VIDEOS

The Man Who Turned Orange

Introduction to Genetic Haemochromatosis

Haemochromatosis - inherited iron overload disorder: What is it?

The Celtic Curse: The Most Common Condition You've Never Heard Of

Haemochromatosis: Symptoms

Mayo Clinic: William Palmer, M.D. - Hereditary Hemochromatosis

Haemochromatosis UK's YouTube Channel

Hemochromatosis.org's patient stories

 

WEBSITES

Haemochromatosis.org.uk - Since hemochromatosis hails from the UK, these guys take it seriously and provide information on a variety of topics like how to talk about hemochromatosis to your family, how to explain hemochromatosis to young people, and an employer's guide to hemochromatosis.

Irish Haemochromatosis Association - they call it "Celtic Curse" for a reason, so Ireland's Haemochromatosis Association explains it all. I especially like their Management, Diet, and Lifestyle page.

Hemochromatosis.org - helpful downloads and forms, as well as explanations of hemochromatosis genetics and iron levels.

Haemochromatosis.org.au - provides videos and an "iron manager" app for tracking your iron levels.

Canadian Hemochromatosis Society- offers an "iron tracker" app and a "self-assessment tool" to see if you're at risk for hemochromatosis

HemochromatosisHelp.com - looks at hemochromatosis from a naturopath's point of view.

The Iron Disorders Institute - dedicated to educating people with all types of iron disorders.

CelticCurse.org - provides unique and interesting news, tidbits, and stories about hemochromatosis.

 

BOOKS

The Iron Disorders Institute Guide to Hemochromatosis by Cheryl Garrison

Packed with info, this is a hemochromatosis "classic" written by Cheryl Garrison who co-founded the Iron Disorders Institute. She's had a big impact on educating patients and doctors alike on the symptoms, treatment, and implications of hemochromatosis.

The Bronze Killer by Marie Warder

This is a touching and inspirational read. It can help anyone understand the difficulties a family can face when someone has hemochromatosis, and one woman's fight to spread the word about this often overlooked disease. (I'm not sure why, but this is a really expensive book to get via hardcover/paperback - it's much cheaper to get the Kindle version)

Survival of the Sickest by Dr. Sharon Moalem

Hands down the most fascinating explanation of the development of hemochromatosis and the role iron has played in not only human evolution but for all living things on earth. I cannot recommend this book enough - it's a page turner! Just FYI - this book discusses a bunch of different diseases, and only the first chapter is dedicated to hemochromatosis. That chapter is well worth it - and honestly, after chapter one you'll be so hooked you'll read the whole book simply because it's that captivating.

Dumping Iron by P.D. Mangan

This is a fast read with unique insight into the dangers of excess iron - not only for people with hemochromatosis, but for anyone wanting to protect their health! P.D. Mangan offers practical advice for ideal iron levels and cites a lot of interesting studies about the damaging effects of excess iron on the body.

Holistic Help for Hemochromatosis by Dr. Eric Lewis, ND

Offering tips and advice for dealing with hemochromatosis, this book explains how to live best with hemochromatosis from a naturopathic doctor's point of view.

 

Happy reading, watching, and learning! 

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