This post is a quick update to let you know we’re still here and still working on raising awareness of hemochromatosis, even though the twin demands of the “day job” and coping with HH have been taking up most of our time (that’s why there’s no fancy image to go with this post).
Fortunately, we are not alone, and hemochromatosis sufferers don’t have to go it alone. There are places to turn for advice, insight, support, and maybe even a smile or two. Places like My Dog’s Teeth, a blog written by Cristi-Rae Baird, a young Canadian HH patient. Here are links to Cristi’s site and several other HH-related places you might not know about. They are all worth checking out.
- The My Dog’s Teeth blog: Cristi’s personal account of living with hemochromatosis (and a dog). Cristi’s in-depth interview with Jillian is well worth reading.
- The MisAdventures of Bad Boy Kimball: a personal blog from Steve Kimball, writing about coping with hemochromatosis. My wife and I can totally relate to Steve’s post on family notification!
- The Iron and Sunshine blog: About living with hemochromatosis (and the bright side of Navy life, and love, in Hawaii). The blog’s author, Jillian, interviewed Cristi and the resulting post offers interesting personal and international perspective on coping with HH.
- The Iron Gal blog: A new blog by Meg. You have to love the title and tag line “Hemo…chroma…WTF?”
- The hemochromatosis forum at Daily Strength: A growing community of HH patients offering mutual support.
- Discussions on the Hemochromatosis Facebook page: These continue to grow and you may find that reading past discussions not only helps you understand what others are going through, but can help you to cope with what you’re having to handle in your own struggles.
- The Iron Disorders Institute website: This is the place to turn for solid medical advice on all things hemochromatosis, including anemia and over-bleeding. Everything on this site is reviewed by HH experts and although it may take a little digging, you can probably find answers to most of your medical questions here.
- Facebook page for Hemochromatosis Society of New York: Started by Ted Scheriff to provide mutual support to HH sufferers in the area.
Finally, sadly, there is one bunch of links you probably don’t want to click. They refer to something called The Iron Overload eBook by Linky Muller. I am seeing a lot of spam tweets for what seems to be a $37 electronic book that probably has less useful information in it than the medically reviewed Iron Disorders Institute Guide to Hemochromatosis that you can buy in paperback on Amazon.com for a lot less than half that price, and as an eBook on Kindle for $9.89. I would be happy to be proved wrong. I am standing by to review the book if the author would like to send me a copy. I certainly sympathize with anyone who has HH and am grateful to all who tell their story, but this does not seem like the way to do it.
(FYI, a spam tweet is created by an automated system of fake accounts that have a human name followed by a number, like Colettaj339. When you check out the profile you see this person has a. sent many tweets, b. not followed anyone. The account merely exists to direct clicks to a promotion in return for money.)