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"But 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. If you want more information about diet & hemochromatosis, plus recipes, we recommend a new book, The Hemochromatosis Cookbook by Cheryl Garrison. Another good reference book is Guide to Hemochromatosis, which is chock full of important information about hemochromatosis. You can order these publications through www.amazon.com or any major book store, or go to: www.irondisorders.org *********************************************** Thinking 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: ************************************************ |
Get tested!! 13 Years: That's how long it has been since the discovery of the HFE gene mutation in August 1996 for the gene mutation for 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 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 Hemochromatosis tests: www.healthcheckusa.com -------------------------------------------- American Hemochromatosis Society (AHS) has served the American public for 11 years: March 31, 1998/March 31, 2009 Thank you for putting your trust in AHS!!
Sandra 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. ----------------------- "Medicine
for the Public" Lecture about Given by: Dr. Susan Leitman on Tuesday, October 21, 2003 at NIH . Click here to see the video. ----------------------------
Before 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 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 $195.00 and the hemochromatosis blood panel is about $50 to $70 depending on the local lab that you use to draw the blood. 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 have HH. Patients requiring an expert in hemochromatosis should click: Here
Sandra Thomas, President, American Hemochromatosis Society
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Medifocus has published an excellent rescource and information
guide for patients and families concerning Hereditary
Hemochromatosis. 
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© 2009 American Hemochromatosis Society This site was last updated on January 17, 2009 |
