Mission
Statement
The mission of the American Hemochromatosis Society (AHS) is to
educate and support the victims of HFE-associated hereditary hemochromatosis
(genetic iron overload) and their families as well as educate the
medical community on the latest research on Hereditary Hemochromatosis
(HH). AHS' aim is to identify through genetic testing, the 43 million+
Americans who unknowingly carry the single or double gene mutations
for HH which puts them at risk for loading excess iron.
AHS
recognizes and envisions that it is possible now and in the future
to prevent needless deaths, disability, diabetes, organ damage, very costly
joint replacements, chemoembolization and surgery for liver cancer,
and organ transplants caused by hereditary hemochromatosis/iron
overload through:
- Routine/universal
screening for HH of the American public
- DNA newborn
genetic screening for HH for all children in America
- Establishment
of universal guidelines for diagnosis and treatment for HH in
minor children and adults
- AHS Projects
which involve patient, family, community and governmental cooperation
and support for screening and awareness include:
- "Children
HHelping Children" (CHHC)) Screening
& Awareness Project for pediatric hereditary hemochromatosis
- "Seniors
HHelping Seniors" (SHHS) Screening
& Awareness Project for geriatric hereditary hemochromatosis
- "Hereditary
Hemochromatosis Congressional Challenge"--DNA testing
of all members of Congress
- "Hereditary
Hemochromatosis Celebrity Challenge"--DNA testing of
all celebrities, including those in the film and music industry.
What
We Do
1. AHS conducts media public awareness/education campaigns to:
- Alert the
public to HH as the most common hereditary disease in America
- Urge screening
and early detection to prevent premature death and disability
- Inform the
public that an inexpensive, confidential, DAT (direct access testing)
commercial DNA test kit and blood panel for HH are now available
for screening adults and children
- Encourage
patients to be assertive in requesting routine iron panels from
their doctors which simultaneously measure both iron overload
and iron deficiency
- Encourage
patients to be assertive in getting treatment if tests confirm
excess iron storage regardless of genetic status.
- Recognize
health risks of routine iron supplementation
- Endorse the
use of HH donor blood to save lives of patients who need a safe
supply of blood and publicize the blood banks which accept HH
blood as donor blood as approved by the FDA (1999)..
- Emphasize
that even women who are of reproductive age are not automatically
"protected" from the effects of clinical iron overload/HH
by blood loss due to monthly menstruation and/or childbearing
and also need to be screened for excess iron and gene mutations which might be passed to offspring..
- Link the
following common diagnoses and symptoms to HH as a possible underlying
cause: diabetes, arthritis/joint pain, abdominal pain, liver/gallbladder
disorders, heart irregularity, depression, chronic fatigue, fibromyalgia,
anemia, impotence, infertility, loss of libido (loss of interest in sex), hormonal
deficiencies, premature menopause, hair loss, hypothyroidism,
and darkening of skin color without exposure to the sun, liver
cirrhosis, primary liver cancer, liver failure, and liver/heart transplant.
2. AHS encourages a citizen lobby with a legislative agenda
3. AHS provides support for HH patients, families and friends
through:
- Online support
groups and discussion lists (listserv) (FHHF discussion group)
- Direct email/telephone
patient support
- Physician
referral in the USA and world
- Free educational
literature on hemochromatosis by mail
- Internet
Web Page with the latest HH information and news (www.americanhs.org)
4.
AHS is a 501c3 non profit health organization. AHS gratefully
accepts your tax deductible donations which will be used to support
the following:
Donations
are used to provide the public and medical community with educational
literature and materials through a comprehensive web site and a Facebook page, and printed
materials, as well as support expenses incurred by the society which
include: office supplies, telephone,
press kits, etc. Checks should be made out to: "AHS,
Inc."
All donations may be in any amount, large or small, "in honor
of" or "in memory of" anyone you wish. Mail donations
to:
American Hemochromatosis Society, Inc. (AHS)
Sandra Thomas, President/Founder
P.O. Box 950871
Lake Mary, Florida 32795-0871
Office Telephone: 407-829-4488 Office Fax: 407-333-1284
Checks
may be made out to "AHS" or "American Hemochromatosis
Society".
Thank
you!
Disclaimer
- The information provided on this site is designed to support, not replace, the relationship that exists between a patient and his/her existing physician(s).
- Currently the American Hemochrmatosis Society does not have
any advertising on its site. It also receives no money whatsoever,
now, or in the past, from the labs, doctors, or medical institutions
that we recommend, or to which we refer patients.
|