The Iron Angel

It's been nearly a year since posting this journal about hemochromatosis and my mother's battle with it.  During the past year I have continued to work to help people through the American Hemochromatosis Society.  I am now working on another "journal" web site that will describe "Neonatal Hemochromatosis/NH", a condition that affects newborns and gives them massive iron overload.  It is thrilling to be able to get the word out about hemochromatosis and related conditions, and help people cope with these situations.  For NH, there have been new and exciting advancements recently, and hope for those who are affected by it.

Once again, I urge everyone to be tested for hemochromatosis.  You should be afraid NOT to be tested.  The simple blood tests for hemochromatosis are: serum iron, TIBC (total iron binding capacity), percent of saturation, and serum ferritin.  These results, combined with the genetic DNA test results, will confirm, or rule out, hereditary hemochromatosis/HH.  It's so simple, I just can't understand why more people aren't doing this on their own. 

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• #6 Comment from belinda.shale@... 
  5/30/07 5:25 AM | Permalink

  Hemochromatosis and Phlebotomy – Updated Blog
  
  Hi
  
  Thanks for all your help so far with our Hemochromatosis blog.  The discussion has changed in the last few days so we would like to take this opportunity to invite you again to a research blog on Hemochromatosis.  We are very interested in you attitude toward Phlebotomy and have therefore added a few new questions.
  
  
  To take part please click this link
  
  http://www.thepatientconnections.com/blog.asp?uid=44
  
  
  The blog is anonymous and easy to use.  Instructions are given on the blog so thanks in advance for your help it is much appreciated.
  
  
  Best wishes
  
  Belinda
  The Patient Connection
  Belinda.shale@thepatientconnections.com
  
• #5 Comment from hopebound1 
  12/7/06 12:29 PM | Permalink

  I think what your doing is great. I'm a 37 year old female with hemochromatosis, still menstrating but having chronic issues. I cant seem to find a diet suited just for someone with hemochrom. it seems that almost all foods are high iron.
• #4 Comment from cste609371 
  7/25/06 8:46 AM | Permalink

  YOU GIVE SO MUCH NEEDD INFO, THANKS... http://journals.aol.com/cste609371/writingsshortstoriesbyStewart/
• #3 Comment from bajdugas 
  6/25/05 10:21 AM | Permalink

  I was told by my doctor that I had a high iron content several years ago but no memtion of Hemochromatosis was mentioned so I ignored this information.  I'm now entering my seventies and have learned that other members of my family have been informed of high iron content also.  I have symtoms and intend to be tested.  I'm greatful for this web-site and the American Hemochromatosis Society.  The knowledge I've obtained here will enable me to get the treatment I need.  Thank you.  
• #2 Comment from lawrencel2 
  1/19/05 2:41 PM | Permalink

  I have hemochromatosis. I have not been  getting my phlebotomies regularly and just stopped taking a daily dose of "ester C vitamins" to the tune of 3000 mg's a day.
  Yesterday , I had a physical, and my Dr. took blood test and is going to put me back in touch with a specialist I was seeing alittle more than a year ago.
  Am I in any danger , because of the large dosages of vitamin c I was taking?
  I don't show any symptoms , other than my libido has taken a bit of a vacation lately  lol, and I do tend to tire a little easier than I used to. I am 44yrs old and a male.
  It would be easier if more blood donor service centers allowed us to "donate". my work hours don't coincide with donor service theraputic hours