July 26, 1996

Note: In June 1996, while I was still the National Director of Public Education for IOD Association, I attended the 14th Annual Hemochromatosis Symposium in St. Louis, Missouri sponsored by Iron Overload Diseases Association. Following that medical convention, I embarked on a two month trek to increase iron overload awareness campaign with David Snyder, IOD Association Treasurer.

We visited many cities, large and small, including Louisville, Kentucky; Philadelphia, PA (where we met Dr. Chris Friedrich who is heading up the new genetics clinic at the University of Pennsylvania which is focusing on hemochromatosis); Annapolis & Baltimore, Maryland; Washington, D.C.; Alexandria, Virginia; Charlottesville, Virginia (where we made first contact with Mark Worthington, MD at the University of Virginia who is doing exciting research in the field of hemochromatosis); Asheville, North Carolina; and Orlando, Florida; to name but a few of the cities where we contacted newspapers and media about iron overload. Two newspapers, located in small communities, wrote outstanding stories on our mission and the subject of iron overload/hemochromatosis.

Although repeated press releases were faxed and phone calls were made to editors and reporters at each newspaper in dozens of large and small cities, only these two publications wrote articles. Unfortunately, the media often thinks that there is "no story" under the heading of iron overload/hemochromatosis. These two newspapers, The Mt. Sterling Advocate (Mt. Sterling, the birth place of my mother who has hemochromatosis, is just outside of Lexington) and the Daily News of Chester County, PA (the town of Westchester, PA is just outside of Philadelphia) have shown the vision and imagination needed to write outstanding stories about this important health topic.

The Iron Overload Diseases Association congratulates them on a job well done and urges other newspapers to publish stories on iron overload in order to increase public awareness and save lives!

Sandra Thomas, President, American Hemochromatosis Society (AHS) mail@americanhs.org

Mt. Sterling Advocate/Mt. Sterling, Kentucky/
Thursday, July 25, 1996 Community Section

"Daughter Putting Iron Will Into Blood Disease"

by Lisa Tolliver

Josephine Bogie Thomas had too much iron.

Her body was absorbing too much from an ordinary diet. It could have been fatal if left untreated. but 12 years ago she was diagnosed with hemochromatosis, or iron overload. Her life was saved. Now she works to save others.

Thomas, a Mt. Sterling native, grew up in the house that now houses the Mt. Sterling golf and Country Club. She left when she was 13 years old, but because of strong family roots she has never really been astray. Now Thomas lives in Palm Beach County, Florida where she is the president of the Flagship Chapter of Palm Beach County for the Iron Overload Diseases Association.

Thomas' condition was discovered during a CAT scan. A technician discovered the black deposits in her liver. Then a radiologist determined the deposits were iron caused by hemochromatosis. Her next step was treating the disease by having blood drawn.

Thomas, 75, had been battling a stiff hip joint and had trouble getting around with a walker. But after the blood was drawn and the deposits in her hip started to reduce, she was able to go almost anywhere and do anything.

"I never would have lived," Thomas said.

Her daughter, Sandra Ann Thomas, also works with the IOD Association. She returned to Mt. Sterling June 20th to study her family roots but also to increase public awareness of the disease that threatened her mother's life.

Her mission began 10 years ago, and she hasn't stopped since. she goes around the country speaking to patients and medical professionals.

Hemochromatosis, is the condition where the body allow too much iron from a normal diet to be absorbed. The iron builds up and can cause permanent damage, even death. But with early diagnoses and proper treatment it is manageable. However, there is no cure.

"It's for life," said David Snyder, an Iron Overload Diseases Association activist and National Director of Public Relations. Statistics show 1 in 200 people have the condition and 1 in 8 are genetic carriers. In comparison, Montgomery County has 19,500 people. So, 2,437 people are statistically afflicted with the condition.

"It is the most prevalent abnormal gene there is." Josephine Thomas said.

"It's here. It's common. It's deadly. But there is a treatment for it." Sandra Thomas said. "Nobody has to die."

But many do. Thomas said people relate stories about a family or loved one who had iron overload, but it was discovered only in the autopsy.

Thomas believes her grandfather and Josephine's father, Joseph Chenault Bogie, may have died from hemochromatosis.

"He had a lot of the symptoms associated with iron overload," Sandra Thomas said.

"I am sure in my heart he died as a result of this condition," Josephine Thomas, said. "He had diabetes, cancer, and heart trouble, which are all manifestations of it."

This is the scenario in a lot of cases, according to Thomas. Most people do not know they have the disease until their acquire the symptoms.

Symptoms include heart irregularities or failure, chronic fatigue, cirrhosis or cancer of the liver, arthritis, impotence, sterility, infertility, diabetes, or early menopause.

"We figure 10 percent of the diabetes cases are caused by this," Thomas said.

However, she suggests getting tested before symptoms occur because they usually represent a more advanced irreversible stage of the condition. But even if symptoms are present a test should still be done.

"With treatment symptoms can improve, go away completely or stay the same," Thomas said.

The test for hemochromatosis is a complete iron profile. This includes four blood tests: serum iron, total iron binding capacity (TIBC), percent of saturation and serum ferritin.

If an iron overload is found, treatment should be started immediately to remove the excess. This is done by bloodletting. Aggressive treatment, having blood drawn once or twice a week needs to be done at the beginning. After aggressive treatment, a patient needs to sustain a normal iron level by having blood drawn whenever iron levels increase.

Josephine Thomas has had 103 pints of blood taken after being diagnosed 12 years ago, averaging about one pint every six weeks.

Bloodletting tricks the brain, according to Snyder.

"After the blood is drained the brain tells the red blood cells they need iron," he said. "The blood then gets it from the stored up iron in the body."

This is how iron levels are reduced in a hemchroamtosis patient. If these levels are not reduced, then the potentially lethal symptoms can occur.

"Iron is a metal and it is causing your body to rust," Snyder explained.

If iron overload is found in a patient, blood relatives should also be tested since the condition is hereditary.

"It might not be the case, but it might be, so why not check it out?" Thomas said.

Following her own advice, Thomas gets checked once a year.

Even if a family member is not affected, Thomas said it is still a good idea to get checked every three to five years.

Hemochromatosis not only genetic, it can be acquired. People who require frequent blood transfusions, take vitamin C, drink a alot of alcohol, eat a large amount of red meat or have e high iron diet may have the damaging deposits of iron.

"Both types of the condition will kill you," Snyder said.

"It makes me angry when people don'[t get the test when they can be diagnosed and treated," Thomas said.

"Just like you can't tell if I have high blood pressure by looking at me, you can't tell me if I do or don't have it (iron overload) without the test," Snyder said.

At the present time, the Centers for Disease Control in Atlanta is working on requiring the iron profile as a routine part of a checkup. But until they do, and even after, Thomas and Snyder will still be speaking with medical professionals to increase awareness.

Ten years after her mission started, Thomas is still fighting to save others' lives. Her ambition hasn't dulled.

"I'm actually more interested now than ever before," Thomas said. "We can see the light at the end of the tunnel," Snyder said.

(c) 1996 Reprinted with permission of the Mt. Sterling Advocate

Letter to the Editor, Glen Greene, of the Mt. Sterling Advocate::

Mt. Sterling Advocate Mt. Sterling, Kentucky

August 6, 1996

Editor:

The article, "Daughter putting iron will into blood disease" on July 25, 1996, will not doubt save lives in Mt. Sterling and surrounding communities. My mother, Josephine Bogie Thomas, and I wish to sincerely thank the Mt. Sterling Advocate for bringing this disease to the attention of the residents of Mt. Sterling. Lisa Tolliver did an excellent job in covering this medical condition and the accompanying photos also vividly covered the points made in the story.

I have already received numerous letters from Mt. Sterling residents as well as people from surrounding areas in Kentucky who read the story in the Mt. Sterling Advocate. For those who are on the Internet, our IOD Web Page address is: http://www.emi.net/~iron_iod/

Please know that the Iron Overload Diseases Association stands by to help and support the residents of Mt. Sterling, Kentucky when they need it. They may call, write, or email us anytime with questions or requests for free literature. I hope that the Mary Childs Hospital will also consider some educational programs on this topic for their doctors as well as the community as they will be greatly involved with the treatment of the people with this condition.

Since your story ran on July 25th, the Associated Press has run a story on July 29th on the discovery of the hemochromatosis (iron overload) gene by Mercator Genetics, Inc. in California. This is a monumental medical breakthrough and a story on this discovery appears in the August issue of Nature Genetics as well as in major newspapers all over the country.

The Mt. Sterling Advocate is to be commended for seeing the importance of public awareness and the role that the media can play in that vital part of the identification of those individuals in this country, more than 1.25 million, who have this commonly undiagnosed condition.

Sincerely,

Sandra Thomas, National Director of Public Education Iron Overload Diseases Association, Inc. (IOD) (non-profit)