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

Our 14th Anniversary of Service to the Public: March 31, 1998 to March 31, 2012 Thank you for putting your trust in the American Hemochromatosis Society Visit us (and "Like" us) on Facebook!!!! www.facebook.com/HereditaryHemochromatosis May 2012 The Month of May is National AHS Hereditary Hemochromatosis Screening & Awareness Month Help us to spread the word & get tested! In Memoriam/Orlando Sentinel   JOSEPHINE BOGIE THOMAS IN LOVING MEMORY OF |       JOSEPHINE BOGIE THOMAS April 25, 1921 - May 13, 1999 On May 13th, Mother's Day, it will be 13 years since I lost you. You are remembered today and every day, with love and affection for your beauty and pure sense of love and charity. The memory of you is a cherished possession of all who knew you. Robbed of your life by a common but little known genetic disease, hereditary hemochromatosis, your legacy of giving and caring lives on through the work of the American Hemochromatosis Society (www.americanhs.org). You will always be in our hearts.        Your daughter, Sandra Thomas Published in the Orlando Sentinel on May 13, 2012 See memorial tributes to Josephine in these newspapers: Orlando Sentinel--(Central Florida)--May 13, 2012 Palm Beach Post (Palm Beach County, FL)--May 13, 2012 Mt. Sterling Advocate (Mt. Sterling, KY)--May 13, 2012     "The Great Ride"   Illinois Man to Bike from Shanghai to Dublin for Hemochromatosis Awareness starting on Monday, May 21, 2012! 2 Continents, 11 Countries, 8,000 miles! Brendan Kay, 29, of Palos Park, Illinois started a bike ride on Monday, May 21, 2012 from Shanghai, China to Dublin, Ireland to increase public awareness and raise funds for a special cause: hereditary hemochromatosis (HH), which his uncle has. Brendan, will be accompanied by Ben Shuker, 25, a friend and follow adventurer from Australia.  Brendan estimates that it will take six months to complete the ride.  You can keep up with Brendan's travels through this website, the AHS Facebook website or Ben's blog: http://shanghai-dublin.tumblr.com/ To make a donation to "The Great Ride!!" please click here:                                                                 Ben Shuker, left, and Brendan Kay   The American Hemochromatosis Society extends its sincere sympathy to the family and friends of Lewis J. Brescoach who died from hemochromatosis at the age of 56, on March 14, 2012 in Fairmont, West Virginia. International BioIron Society(IBIS) For more information: www.bioiron.org    Josephine Bogie Thomas (left) & her daughter, Sandra Thomas, on the balcony of their apartment in North Hills, Pittsburgh, Pennsylvania in November 1998, six months before Josephine died from hereditary hemochromatosis on May 13th, 1999.  AHS Remembers 5 Years Later...August 27, 2007 to August 27, 2012 Joseph Burghard Thomas Board member and major benefactor of the American Hemochromatosis Society October 5, 1914 to August 27th, 2007 Dad, you are missed every day.  You did so much to help the cause for awareness of hereditary hemochromatosis, the disease which took your dear wife, Josephine, from you.  You cared for her tenderly, and stood by her without exception, tirelessly, patiently, you were there for her from diagnosis in 1983 to her death in 1999.  You set a wonderful example of devotion and dedication.  One which I easily and gladly followed when it was your turn to face the final chapter of your life.  You and mom were the best, and are dearly missed.  Thank you for all of the timeless life lessons you taught me. Love,  Sandra   (Joe was the father of AHS president and founder, Sandra Thomas and husband of 59 years to Josephine Bogie Thomas, inspiration for the founding of this organization) Joseph Burghard Thomas Obituary See In Memoriam tribute in Orlando Sentinel on August 27, 2011 Sandra Thomas and her father, Joe B. Thomas Unraveling Your DNA's Secrets     MediFocus Guidebook on Hereditary Hemochromatosis Medifocus has published an excellent rescource and information guide for patients and families concerning Hereditary Hemochromatosis.       Visit the AHS Neonatal Hemochromatosis Information Center (NH) Site  "Dylan" (left) has Neonatal Hemochromatosis (NH).  AHS sponsors 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 in the past.   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.  Please note:  If you have hereditary hemochromatosis and are pregnant, you will not have an NH baby.  NH is a separate condition which is not genetic like hereditary hemochromatosis (HH) is.   Visit our web site for Neonatal Hemochromatosis (NH) at: www.neonatalhemochromatosis.org
	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!
	Check out the YouTube video created by the Canadian Hemochromatosis Society: www.youtube.com/watch?v=UeRr-S2aWrY
	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. www.fda.gov/BiologicsBloodVaccines/BloodBloodProducts/RegulationoftheBloodSupply/Variances/ucm164649.htm   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!

"But, what should I eat?" 

Do you have questions about diet and hemochromatosis?

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 & hemochromatosis, plus recipes, we recommend a new book, The Hemochromatosis Cookbook by Cheryl Garrison. Another good reference book is Guide to Hemochromatosis, which is chock full of important information about hemochromatosis.  You can order these publications through www.amazon.com  or any major book store, or go to: www.irondisorders.org

Thinking about having a liver biopsy?  FerriScan could be your non-invasive alternative!  Read more about this new technology and where you can find it at:

www.resonancehealth.com

Get tested!! The discovery of the HFE gene mutation was announced in August 1996.  This was a huge breakthrough in the growing and expanding field of hereditary hemochromatosis (HH). 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 just a few 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 Hemochromatosis tests: www.healthcheckusa.com

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American Hemochromatosis Society (AHS) has served the American public for 14 years:

March 31, 1998/March 31, 2012

Thank you for putting your trust in AHS!!

Sandra Thomas & David Snyder of AHS, with the late, Joe B. Thomas (seated), former 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 about
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 iron overload, aka, "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.  The insurance industry 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 HealthCheckUSA based in San Antonio, Texas, which markets the DNA test kit made by Kimball Genetics lab, a CLIA accredited lab, based in Denver, Colorado.  To learn more about HH testing you may go to 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, thusly protecting your insurability.  The DNA test kit is about $156.00-$230.00 and the hemochromatosis blood panel is about $60 to $70 depending on the local lab that you use to draw the blood.   Please note that AHS does not, nor ever has, received any monetary compensation for referring patients to this, or any, lab. Results are sent directly to the patient; and 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.  Those patients with advanced stages of hemochromatosis and associated symptoms and conditions, should wear a "medic alert" bracelet at all times so that medical personnel will know they have HH.

Patients requiring an expert in hemochromatosis should click: Here

Sandra Thomas, President, American Hemochromatosis Society

We need you!

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 make a tax deductable donation by check or money order through the mail. Donations may be made to honor the memory of a friend or loved one or to honor 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 and help others through your generous giving.