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The AHS is now registered with several United Way chapters. If you donate to the United Way, please make AHS your charity of choice.

 

The American Hemochromatosis Society is proud to have all of our current financial and tax documents listed with GuideStar, the charitable giving watchdog group.

 

 

 


Have a Happy & Healthy New Year!

Your New Year's Resolution for 2007: Test yourself for Hemochromatosis!

Go to: www.healthcheckusa.com or call: 1-800-929-2044 to order

the DNA genetic test kit and Hemochromatosis blood panel

It's just that simple!

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See the January 8th, 2007 issue of US News & World Report Magazine available now --AHS president, Sandra Thomas and the American Hemochromatosis Society are mentioned in this article by Nancy Shute on genetic testing and its future.

Current Cover

Unraveling Your DNA's Secrets

     "...Ever since a gene that causes the disease was detected in 1996, doctors have debated widespread screening. Sandra Thomas, president of the American Hemochromatosis Society, encourages people who contact her to use DTC tests and thinks that everyone should be screened for the disease, which killed her mother."

Do-it-yourself genetic tests promise to reveal your risk of coming down with a disease. But do they really deliver?  For the full story, go to:   www.usnews.com

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MediFocus Guidebook on Hereditary Hemochromatosis


Medifocus has published an excellent rescource and information guide for patients and families concerning Hereditary Hemochromatosis.

 

 

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Visit the AHS Neonatal Hemochromatosis (NH) Site

 "Dylan" (left) has Neonatal Hemochromatosis (NH).  AHS has launched a web site for this rare newborn iron disease.  Learn more about NH in newborns and the exciting new treatment which offers new hope for pregnant women who have already had an NH baby.  

If you have an NH baby, please email or call us at 407-829-4488 so you aren't going through this experience alone.  There are others who have been through this same experience and doctors who are eager to help in any way they can.

 

Visit our new web site for Neonatal Hemochromatosis (NH) at:

www.neonatalhemochromatosis.org

 

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American Hemochromatosis Society exhibited at the American Society of Hematology at the Orange County Convention Center

 in Orlando, Florida on December 8-11, 2006

Sandra Thomas at ASH booth 2538 at the 2006 medical convention

for the American Society of Hematology (ASH).  The American Hemochromatosis Society has exhibited numerous times in the past at ASH conventions, which gives the society the opportunity to network with hematologists and other doctors who treat hemochromatosis patients clinically or who do research related to hereditary hemochromatosis (HH). 


Find a physician! See our new updated "Expert Physician & Referral Page"!  Or, recommend your doctor for the AHS referral list.  Click here to see the physician map!


If You Love Raw Oysters and have HH....read this!                                                                          

Raw Oysters can be deadly for hemochromatosis patients with liver damage. HH patients should never eat raw oysters!

 

Write to your political representatives and tell them that you want U.S. blood banks to accept and use HH blood and to make it a mandate.  Tell them about your own hemochromatosis case and tell them that more funding is needed for patient and physician education as well as research for a cure!

 

Does your blood bank use Hemochromatosis blood as donor blood?

The FDA has now posted a list of blood banks that use hemochrmatosis patients' blood as donor blood because of the tireless work of our Executive Director, David Snyder.  Please click on "More Info" to see the FDA list.

The FDA approved the use of iron overload, Hemochromatosis blood as donor blood in 1999 and allows Hemochromatosis patients to get treated for free. Click here to learn how to help your local blood bank to participate!


Read a journal about Josephine Thomas, "The Iron Angel" on AOL

Be sure to check out the Journal on AOL called "The Iron Angel". This AOL Journal shares personal thoughts and photos of AHS founder, Sandra Thomas, and her mother, with you and others online, and even allows you to add your own comments.

Questions about diet and hemochromatosis?

             

But what should I eat?  We hear this question almost every day from patients and their family members all over the country.   Although diet is usually not used to control or manage hemochromatosis, there can be important things to know about what to eat or not eat.  If you want more information about diet and hemochromatosis, plus recipes, we recommend, Cooking with Less Iron by Cheryl Garrison.  Another good reference book is Guide to Hemochromatosis.  You can order these publications through Amazon.com  or go to:      www.irondisorders.org

 

Ten years: That's how long it has been since the discovery of the HFE gene mutation in August 1996 for hereditary hemochromatosis. Above, David Snyder, AHS vice president and Sandra Thomas, AHS president, demonstrate how to painlessly use the DNA cheek swab stick to collect a sample to send to the lab.  Results are ready in about a week to ten days.  A commercial test has been available since 1997 and direct access testing (DAT) has been available for several years, yet most patients do know know that they can test themselves for hereditary hemochromatosis.  To order a test kit call HealthCheckUSA at: 1-800-929-2044  or go to their web site for more information on HH tests: www.healthcheckusa.com

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American Hemochromatosis Society (AHS) will soon

celebrate 9 years of serving

the public!

March 31, 1998 to March 31, 2007

Thank you for putting your trust in AHS!!

Sandra Thomas & David Snyder of AHS, with Joe B. Thomas (seated), board member, observe the 8th anniversary of AHS while displaying a framed medical feature article on hereditary hemochromatosis from the January 2004 issue of Hepatitis Magazine.

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"Medicine for the Public" Lecture
Hereditary Hemochromatosis

Given by: Dr. Susan Leitman on Tuesday, October 21, 2003 at NIH . Click here to see the video.

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Before you see your doctor to find out whether or not you have hemochromatosis, please know that a "formal" diagnosis of hemochromatosis on your medical records may put you at risk of being denied health insurance, life insurance, and long term care insurance in the future.  Why?  Because the insurance industry doesn't like "hereditary hemochromatosis" and what it can do to the body and it certainly doesn't like the kind of medical bills that it can create for the patient.  It considers hemochromatosis to be a potentially fatal disease which will cost them a lot of money before the patient dies.  Of course, hemochromatosis, when diagnosed early, does not cause organ damage or death, and the patient will have a normal life span.  In addition, the patient is not going to cost the insurance company a lot of money.  The problem is that the insurance industry is behind the times when it comes to judging insurability of a HFE-associated hereditary hemochromatosis patient.   What can you do?  If you think you are at risk for having hemochromatosis, you must be tested.  However, you can easily test yourself to find out if there is indeed any genetic risk.  How can you do that?  By contacting this CLIA accredited lab: HealthCheckUSA based in San Antonio, Texas.  Their web site: www.healthcheckusa.com The toll free number is: 1-800-929-2044.  Ask for a DNA genetic do-it-yourself home test kit for the HFE gene mutation for hereditary hemochromatosis  (HH) and the hemochromatosis blood panel which includes percent of saturation and serum ferritin, two of the main blood tests used to confirm a diagnosis.  Many patients have used this testing method known as "DAT" or direct access testing, which keeps the results private, confidential and for your eyes only.  The DNA test kit is about $205.00 and the hemochromatosis blood panel is about $50 to $70 depending on the local lab that you use to draw the blood.   Based on your test results, you can decide how to proceed.  Early stage cases may only need to donate blood from time to time, other cases, which are more advanced, will need to be evaluated by a medical expert in the field of hemochromatosis. 

A tribute to Ann Landers who helped the Hereditary Hemochromatosis cause through her syndicated column...

Ann Landers' column featured three different letters on iron overload disease, hemochromatosis written by Sandra Thomas, President and Founder of AHS--the most recent letter being published on July 1, 2000. Sadly, Ann passed away on June 22nd, 2002 at the age of 83.  By giving space in her column to HH, she reached millions who had never heard of or read the word--hemochromatosis. She saved countless lives that would have otherwise been lost to this disease.  Thank you, Ann, on behalf of the many people whose lives you saved through your newspaper column. Click Here to read it!

A Message from AHS President Sandra Thomas

Welcome to our web site which features information on HFE associated hereditary hemochromatosis.  We are here to help you in any way we can...by giving you the basics of hemochromatosis and presenting a user friendly web site to help you find the information you need to save your life and the lives of those you love.

Click here for for the latest letter from Sandra . . .

 

 

We need you! Become a Member Online! Donate Online!

Has this web site helped you in your search for information on hemochromatosis?   Has a phone call to our office, a visit to our web site, helped you get a diagnosis of hemochromatosis for yourself or a loved one?  If so, please help us to carry on our quest to educate the public and medical community about HFE-associated hereditary hemochromatosis.  The American Hemochromatosis Society (AHS) is a non profit 501(c)3 health organization dedicated to increasing awareness about HH.  You may become a member or make a tax deductable donation through our secure web site or through the mail. Donations may be made to honor the memory of a friend or loved one or to hononr someone who is living, such as the doctor who diagnosed you and saved your life from hemochromatosis.  Remember the American Hemochromatosis Society in your will or trust.  Help us to save help others through your generous giving.

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© 2007 American Hemochromatosis Society

This site was last updated on January 7, 2007