a Happy & Healthy New Year!
New Year's Resolution for 2007: Test
yourself for Hemochromatosis!
to: www.healthcheckusa.com or
call: 1-800-929-2044 to order
the DNA genetic test kit and
Hemochromatosis blood panel
just that simple!
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.
"...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."
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
Guidebook on Hereditary Hemochromatosis
Medifocus has published an excellent rescource and information
guide for patients and families concerning Hereditary
the AHS Neonatal Hemochromatosis (NH) Site
(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
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.
our new web site for Neonatal Hemochromatosis (NH)
Hemochromatosis Society exhibited
at the American Society of Hematology at
the Orange County Convention Center
Orlando, Florida on December
Thomas at ASH booth 2538 at the 2006 medical convention
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).
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!
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!
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!
a journal about Josephine Thomas, "The Iron Angel"
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.
diet and hemochromatosis?
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
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
Hemochromatosis Society (AHS) will soon
9 years of serving
31, 1998 to March 31, 2007
you for putting your trust in AHS!!
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.
for the Public" Lecture
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 "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.