This website is dedicated in loving memory to Josephine Bogie Thomas, a founding board member of the American Hemochromatosis Society. Seventeen years after a late stage diagnosis, she died of primary liver cancer due to HFE-associated hereditary hemochromatosis (HH) on May 13, 1999 in Pittsburgh, Pennsylvania. She was the beloved wife of 59 years to Joe Thomas and devoted mother to daughter, Sandra Thomas, who is president/founder of the American Hemochromatosis Society. Josephine was a hemochromatosis awareness activist and an inspiration to all who knew her. Her dream was for everyone to have early genetic testing for HFE-associated Hereditary Hemochromatosis so that they could have an early stage diagnosis before organ damage leading to premature death occurred. Her dream lives on through this web site and the work of the American Hemochromatosis Society. She is, and always will be, our “Iron Ange
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”.
- 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.