May 2013 is National AHS Hemochromatosis
Genetic Screening and Awareness Month
This is the time to make the commitment to get tested
and to test your family members...
Help us to spread the word about Hereditary Hemochromatosis!
It all started 15 years ago...
Josephine Bogie Thomas
She was the inspiration for founding the
American Hemochromatosis Society
Sandra Thomas, Founder/President
15th Anniversary of Service to the Public!!
31, 1998 to March 31, 2013
(See the President's Message at the bottom
of the page for a history of AHS)
you for putting your trust in the American
Hemochromatosis Society (AHS)
Visit us (and "Like" us) on Facebook!!!!
Take a trip down memory lane... Old AHS Archives!!
In Loving Memory...
The American Hemochromatosis Society extends its sincere sympathy
to the family and friends of
DIANNE M. (HOUGHTON) RICHARDSON
April 28, 2013
Peggy Lynn Markiewicz
Born September 6, 1950 in Kokomo, Indiana
Died: March 14, 2013
Sammie Ackerman Guthrie
Born on Dec. 2, 1931
Departed on Jan. 31, 2013
Resided in Nashville, TN
(See the full obituaries in the Memorial Photo Gallery)
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 6 Years Later...August 27, 2007 to August 27, 2013
Board member and major benefactor of the
American Hemochromatosis Society
October 5, 1914 to August
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.
(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
Books on Hemochromatosis....
Guide to Hemochromatosis
Guide to Hemochromatosis, which is chock full of important information about hemochromatosis, can be ordered through www.amazon.com
or any major book store, or go to: www.irondisorders.org
Guidebook on Hereditary Hemochromatosis
Medifocus has published an excellent rescource and information
guide for patients and families concerning Hereditary
the AHS Neonatal Hemochromatosis Information Center (NH) Site
(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.
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. If you have hereditary hemochromatosis and plan to have children, you will not have an NH baby because of that diagnosis. NH is a separate condition which is not genetic like hereditary hemochromatosis (HH).
You can also find us on Facebook.
our web site for Neonatal Hemochromatosis (NH) at:
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!
You Love Raw Oysters and have HH....read this!
Oysters can be deadly for hemochromatosis
patients with liver damage. HH patients should never
eat raw oysters!
out the YouTube video created by the Canadian Hemochromatosis
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.
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!
Check out this article on the history of bloodletting written by an HH patient!:
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, especially if you have an advanced stage of HH.. If you want more information
about diet & hemochromatosis, plus recipes, we recommend a new book, The Hemochromatosis Cookbook by Cheryl Garrison.
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:
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:
Other labs which offer DNA testing are: www.23andme.com and www.hemochromatosisdna.com
Hemochromatosis Society (AHS) has served the American public for
31, 1998/March 31, 2012
you for putting your trust in AHS!!
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.
for the Public" Lecture about
by: Dr. Susan Leitman on Tuesday, October 21, 2003 at
NIH . Click
here to see the video.
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 $99.00-$230.00 (depending on which lab you use) and the hemochromatosis blood
panel is about $60 to $70 depending on the local lab that you
use to draw the blood. If you wish to be tested for three gene mutations for HH including: cys282, his63, and s65d, contact:: www.23andme.com 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
requiring an expert in hemochromatosis should click: Here
Thomas, President, American Hemochromatosis Society