Here are some suggestions for those people who want to become "crusaders" for the cause of public awareness of Hemochromatosis/Iron Overload!:

What could you do?

1.) Talk to friends, family members, about iron overload; urge them to talk to others and use yourself or the family member diagnosed with H as the "sacrificial lamb" example of the family. That is an expression that AHS and doctors use for the first family member who is diagnosed with H. The family member may or may not survive the diagnosis, but they still are the first to be medically and officially identified and therefore alert other family members to the danger of iron overload in their family.

2.) Obtain literature from AHS (free) and distribute it in your community to doctors' offices, hospitals, community health fairs and friends and family. Carry this literature on your person at all times, in your purse, your car, your briefcase; you never know when you'll run into an undiagnosed H patient!

3.) Contact your local newspaper/TV & radio stations. Send them a press release (provided free and mailed directly to the TV/radio station by AHS). Tell them your story. Find others in the community who would be willing to talk publicly about their HH experience.

4.) Write to your political representatives. Urge them to hold a congressional hearing on hemochromatosis and to alert the public to this condition. Urge local politicians such as mayors to write proclamations concerninng HH. AHS has the format illustrated on this web page. Tell your political representatives that you want laws passed banning genetic discrimination in reference to life insurance, health insurance, and job discrimination so that DNA testing for HH is not a concern for patients.

5.) Talk to organizations of which you are a member (social, fraternal, business, church, etc.) and warn them about hemochromatosis. AHS will provide free literature to distribute to attendees. Urge your employer to have a screening program for all employees.

6.) Start a support group in your community at local clinics or hospitals for HH patients and their family/friends. Contact the education department or support group office of your local hospital. Find an interested doctor who will be a facilitator for the support group who is on staff at the hospital.

7.) Write letters to the editor of local and national newspapers about this condition and the need for increased awareness in order to save lives. Call the editor and request to speak with the medical reporter or anyone who might be able to do a feature article on hemochromatosis. Get the reporter's name and address; AHS will send them a press kit. You can follow up or be featured in the article if you wish. Many HH patients have gone on to have their photos and personal stories featured in newspapers across the nation and have saved many lives through the increased awareness that their article provided. Be sure to have the reporter list AHS's address, web site, email address and how readers can get more free information on this topic.

8.) Write to Ann Landers and tell her your story and thank her for featuring HH in her column in 1991, February 7, 1998, as well as July 1, 2001 on hemochromatosis written by Sandra Thomas, President of AHS. Tell her YOUR story!

9.) Volunteer to help AHS in your own community. Hold meetings in your home, local library, church, hospital, doctor's office, the possibilities are endless.

10.) Use your computer and online services to spread the word on iron overload. Read the medical boards and leave messages about Hemochromatosis for related subjects such as genetic diseases, diabetes, cancer, transplants, infertility, heart disease. Urge online medical board leaders to support the education of the public and medical professionals about hemochromatosis. Circulate the Web Page address for AHS at: http://www.americanhs.org and the direct e-mail address of Sandra Thomas at mail@americanhs.org

11.) Call the toll free numbers on the major breakfast cereals and tell these companies that they are adding too much iron to their products, endangering undiagnosed H patients and H carriers. Tell them to put warning labels on their products containing high iron fortification for the safety of their consumers, 1.25 million hemochromatosis patients! The next time you are at the grocery, look at the added iron in the food! Many foods are "fortified" with iron; it's a "selling point"......

12.) Make a donation to the American Hemochromatosis Society! Your donation is tax deductible! Make it payable to: AHS and mail to: American Hemochromatosis Society, PMB 416, 4044 W. Lake Mary Blvd, Unit #104, Lake Mary, FL 32746-2012. Donations can be made "in memory of" or "in honor of" someone, a family member; a physician, etc. Remember AHS in will/trust; make a bequest to AHS. Have a special area to which you would like your donation to go? Earmark it for that purpose such as paying for genetic testing for those who can't afford it, etc.

13.) Do you know how to write a grant? or would you like to learn? There are many of foundations and grant money available to medical/health organizations such as AHS, but someone has to write the grants! Could you write a grant?

14.) Tell your local health store to post warning labels on their iron pills and vitamin supplements containing iron. The warning should say: "No one should take iron supplements or vitamins containing iron, without first establishing the iron storage status in their body with the proper blood tests performed by a medical doctor". We are working to get the FDA to put warning labels on the iron supplements, but in the meantime, a warning could help an undiagnosed hemochromatosis patient. Talk with the nutrition advisor in the health store; give him/her literature from AHS. Do the same with your local pharmacist!

If YOU can think of more ways, please let us know and we'll add your ideas to this list!!

For more info, please contact: Sandra Thomas, President American Hemochromatosis Society (AHS) at: mail@americanhs.org