Each time I blog about hemochromatosis I hear from people affected by this daunting and life-threatening condition. Often these people are frustrated with doctors failing to recognize the condition and with the slow pace of diagnosis and treatment. Fortunately, if you are one of these people, there is a supportive community you can join, online, via email.
It’s called The Excess Iron List, and it includes people from all over the world, people who are dealing with this condition, supporting each other through sharing their experiences. But before I give you the link for this, I want to point out that it is an email discussion list, not an online forum or chat room. That makes it one of the oldest means of getting together over the Internet.
If you haven’t used one of these lists before it can seem a bit strange at first (just to be clear, when you join, you are NOT being put on a public mailing list to get unsolicited information–and the list is moderated by a person, not a machine). The basic operations, like joining the list or leaving it, are carried out by you sending blank email messages to a special email address. For example, to join you send a blank email to: ExcessIron-on@mail-list.com
Fortunately, when you do that, you will get a reply that explains how the system works. The big payoff is being able to share with other people who have an interest in iron overload. So, if you’re interested click here for details of The Excess Iron List. The page is hosted at the Iron Disorders Institute, a reputable source for information about hemochromatosis.
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It seems that most doctors don’t know much about hemochromatosis.
The really sad part is that they just aren’t interested in learning.
Have you ever read a book called “The Bronze Killer”? Check it out on Mobipocket.com or on a website http://www.dromedarisbooks.com which has a special page dedicated to Hemochromatosis. I have often wondered where my family – and numerous others – would be today if the writer of this book had not devoted 30 years of her life to making the world aware of HH
I was so fortunate! My doctor is seriously like “House”…I went into him for my excessive night sweats (at the ripe age of 24). I thought I was in perfect health…working two jobs, going to Univ, active and happy…turns out I had a silent killer working in my body.
My doctor tested my ferritin levels 3 times to make sure…than sent blood work to test my liver and genetics…turns out I have HHC.
I am not scared anymore because I have searched for resources on the internet.
Thanks for your blog!