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NEWS | Sept. 17, 2012

Generational trauma: Former Chief reflects on family history of illness

By Senior Airman Jarad A. Denton 633rd Air Base Wing Public Affairs

"When I was growing up some family members had what we referred to as the 'family disease' that ran on my mother's side. It was killing people."

Retired Chief Master Sgt. Helen Noel paused, shifting uncomfortably in her chair.

"I didn't know it was killing me too."

It started when Noel began feeling tired all the time. Noel made an appointment at U.S. Air Force Hospital Langley with Dr. (Lt. Col.) Kevin Kaps. After several tests, Kaps diagnosed Noel with a vitamin B-12 Deficiency.

"If a doctor says you are B-12 deficient, how many people would know that could be fatal," Noel said. "I didn't."

Noel said she was told her B-12 level was 89. This terrified Noel, because - according to the U.S. National Library of Medicine, normal B-12 values should be between 200 and 900 picograms per milliliter. This diagnosis prompted Noel to question how her B-12 levels could be so low. The answer led her on a journey into her family's past that would shake Noel to her very core.

The Rosenwald Fund and Tuskegee Studies

Noel was able to trace the 'family disease' to a little-known medical study designed to record the natural history of syphilis in the African American population. Initially, it included 600 men - 399 with the disease and 201 without. It was called the "Tuskegee Study of Untreated Syphilis in the Negro Male."

According to the Centers for Disease Control and Prevention, the study began in 1932 as U.S. Public Health Service medical personnel conducted these tests without the benefit of patients' informed consent. Researchers told subjects they were being treated for "bad blood," a local term which described a multitude of illnesses, including: syphilis, anemia and fatigue. However, none of the subjects received the proper care promised to them.

Originally, the study was supposed to last six months. It went on for 40 years.

"My family was presumably part of a study that preceded the Tuskegee Study," Noel said. "It was during the Great Depression, many African Americans were migrating throughout the country."

She was referring to the Julius Rosenwald Fund Syphilis Seroprevalence Studies, which began in 1929, and had virtually the same scope and doctrine as the Tuskegee Study. African Americans were diagnosed, in some cases inaccurately, with syphilis - and then treated with improper methods, including prescribing high doses of Mercury.

"The Mercury they were treating these patients with was passed on congenitally to children," Noel said. "They were passing it on to different generations. It was really the worst possible time to conduct a study like this."

Mercury Treatments

According to Harvard University, treating syphilis with mercury, while seemingly barbaric by today's medical standards, was a common practice since its initial discovery in 1494, and well into the early 20th Century. This resulted in tooth loss; mouth, throat and skin ulcerations; neurological damage and death in the initial patients. The ramifications to future generations have not fully been explored.

During the Tuskegee Study, subjects were given free medical exams, free meals and burial insurance, in exchange for their participation.

"It's not surprising that African Americans went along with the study when you think about that time frame - people's mindsets," Noel said. "Through my own research, I learned that Mercury depletes a person's B-12 level. What gives people the right to experiment on human beings without their knowledge and consent?"

The issue found a voice when the Associated Press published a story on the Tuskegee Study in July 1972. The subsequent public outcry led to the Assistant Secretary for Health and Scientific Affairs to appoint a panel to review the study. While it was revealed that the study subjects had freely agreed to be examined and treated, no evidence suggested that the researchers had informed them of the study or its true purpose. Often times, according to the CDC, the subjects were misled by the researchers, to ensure cooperation.

During the study, adequate treatment was often withheld.

"Even when penicillin became the drug of choice for syphilis in 1947, researchers did not offer it to the subjects," according to the CDC. "The advisory panel found nothing to show that subjects were ever given the choice of quitting the study, even with this new, highly effective treatment became widely used."

The last direct participant to the Tuskegee study died in January 2004. Currently, there are 15 descendents of study subjects receiving medical and health benefits for congenital conditions.

Noel said several members of her family have become ill or passed away from diseases which could be directly related to congenital mercury poisoning, including her B-12 deficiency. She said Kaps' accurate diagnosis gave her a new lease on life.

"He was a heavenly angel assigned to me," she said. "I attribute him and his actions to saving my life. Had he not been so aggressive in my treatment, I would not be here today."

The Road Ahead

Noel said she counts her days alive as a blessing, after her B-12 treatments she said she feels wonderful - like she could run a marathon. She isn't looking to exact vengeance on the ghosts of her family's past. But, she is looking toward the future.

"This was never an issue of race," Noel said. "This was an issue of human rights."

Noel encourages people to pay attention to the levels of B-12 in their system, noting a severe deficiency could be fatal, if left untreated for more than three years. The CDC also states that one in every 31 adults, over the age of 51, have a B-12 deficiency.

"I'm not the type of person to blame others for the wrongs that have been committed here," she said. "You can't change the past, but you can educate the next generation."