Hemochromatosis Genetic Screening (cont.)
Should I Be Screened?
The decision to have hereditary hemochromatosis carrier screening is a personal one.
This testing is used to find out if a person has an increased chance for having hemochromatosis. It may be recommended for people who have a close family member—parent, brother, sister, or child—with this disease.
Carrier testing is expensive. If you are paying for the test, you will want to consider whether the cost of the testing is worth the results.
Why Not Be Screened?
There may be reasons you would choose not to have carrier testing.
- You think that your risk of being a carrier is low. This may be true if you are of African or Asian descent. Fewer people in these groups have hereditary hemochromatosis.
- Carrier testing is expensive. You may decide not to have testing if your insurance does not pay for it.
- Testing is not always able to predict if you will have hereditary hemochromatosis. Although the test detects the most common hemochromatosis gene (HFE) mutations, there may be other HFE mutations that the test does not detect. There is a small chance that you are a carrier even if the results are normal because there may be other HFE mutations that the test does not find. HFE gene testing is usually not used to check for other, less common causes of inherited hemochromatosis.
Other Places To Get Help
|Genetics Home Reference, U.S. National Library of Medicine|
|8600 Rockville Pike|
|Bethesda, MD 20894|
|Phone: ||1-888-FIND-NLM (1-888-346-3656)|
|Fax: ||(301) 402-1384|
|Web Address: ||www.ghr.nlm.nih.gov|
The Genetics Home Reference provides information on hundreds of genetic conditions. The website has many tools for learning about human genetics and the way genetic changes can cause disease. It also has links to additional resources for people who have genetic conditions and for their families.
|Iron Disorders Institute|
|P.O. Box 675|
|Taylors, SC 29687|
|Phone: ||1-888-565-IRON (1-888-565-4766)|
|Fax: ||(864) 292-1878|
|Web Address: ||www.irondisorders.org |
The Iron Disorders Institute is a national voluntary health agency that provides information about iron disorders such as hemochromatosis, acquired iron overload, sickle cell anemia, thalassemia, iron deficiency anemia, and anemia of chronic disease. The organization works with a scientific review board as well as various medical professional groups. A free newsletter, idInsight, is available.
|National Digestive Diseases Information Clearinghouse|
|2 Information Way|
|Bethesda, MD 20892-3570|
|Fax: ||(703) 738-4929|
|TDD: ||1-866-569-1162 toll-free|
|Web Address: ||www.digestive.niddk.nih.gov|
This clearinghouse is a service of the U.S. National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the U.S. National Institutes of Health. The clearinghouse answers questions; develops, reviews, and sends out publications; and coordinates information resources about digestive diseases. Publications produced by the clearinghouse are reviewed carefully for scientific accuracy, content, and readability.
|National Heart, Lung, and Blood Institute (NHLBI)|
|P.O. Box 30105|
|Bethesda, MD 20824-0105|
|Phone: ||(301) 592-8573|
|Fax: ||(240) 629-3246|
|TDD: ||(240) 629-3255|
|Web Address: ||www.nhlbi.nih.gov|
The U.S. National Heart, Lung, and Blood Institute (NHLBI) information center offers information and publications about preventing and treating:
- Diseases affecting the heart and circulation, such as heart attacks, high cholesterol, high blood pressure, peripheral artery disease, and heart problems present at birth (congenital heart diseases).
- Diseases that affect the lungs, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema, sleep apnea, and pneumonia.
- Diseases that affect the blood, such as anemia, hemochromatosis, hemophilia, thalassemia, and von Willebrand disease.
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