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HIV: Lurking Beneath the Surface: Despite Low Infection Rate, Public Needs to Practice Healthy Lifestyles

Posted on: Monday, 27 February 2006, 09:00 CST

By Bill E. Wambeke, American News, Aberdeen, S.D.

Feb. 26--By Bill E. Wambeke

American News Writer

To many people, John Helgerson will be known as the first person to be diagnosed with AIDS in South Dakota.

But to Carrie Genovese Johnson, he was much more than that. The Yankton-area native had a master's degree in theatre costume design, was extremely artistic, played the piano, had the family nickname of Stub, and was quite the debater. His parents pushed him, like the rest of his brothers and sisters, to be different so that he could be himself.

Most importantly though, he was Johnson's brother. AIDS killed Helgerson on Dec. 3, 1986. He was only 37 years old.

Helping others: Twenty years later, Johnson teaches others about the disease that claimed her brother's life. She brings a human face to a worldwide epidemic that is actually on the rise in South Dakota -- and that people still don't fully understand.

Johnson, who has been giving lectures on HIV/AIDS prevention throughout the state for more than 10 years, recently took the AIDS discussion out of the realm of statistics for Northern State University education majors. She talked about the lives and the families -- including her own -- who have to deal with the diagnosis of the human immunodeficiency virus, which can lead to acquired immunodeficiency syndrome, or AIDS.

HIV, says Johnson, doesn't discriminate.

"It doesn't care who you are, what you are or where you are. It just wants a warm body to live in," she told the NSU group, as she was surrounded by a roomful of shirts, scarves, paintings and drawings her brother made throughout his life.

Johnson and Marilyn Jensen, both trainers with the South Dakota Department of Education, were teaching NSU's future teachers how to deal effectively with HIV/AIDS in the classroom.

As HIV/AIDS cases had a sharp increase in the state this last year, the students have good reason to learn about the disease.

Numbers rising: Overall numbers of HIV/AIDS reported cases have been rising in South Dakota since the state started keeping track in 1985. Last year alone, there were 33 new cases, the most since 1995, according to the South Dakota Department of Health.

There were 288 people living with HIV/AIDS in the state in 2005. More than 450 cases have been reported since 1985, the year of the first diagnosis -- Helgerson's.

Helgerson, who was gay, was living in New York when it is believed he contracted the HIV virus.

Normally the state sees about two dozen new cases every year, said David Morgan, program manager for sexually transmitted diseases for the South Dakota Department of Health. He said some of the added cases are due to "clusters," where several people were using methamphetamines and intravenous needles.

Even after 20 years of education, misconceptions still follow the disease.

"People think it's a gay disease. Only drug users get it -- immoral people," Morgan said.

While homosexuals and those that use drugs contract the disease at a higher rate than homosexuals, heterosexuals make up a significant number of total cases reported in the United States. In a report by the Centers for Disease Control, it was estimated there were 42,514 new diagnosed AIDS cases in the country. Of that total, 13,128 people contracted the disease through heterosexual contact. While those who contracted the disease through male-to-male sexual contact and drug use constitute more than 26,000 cases, it is not as one-sided as some people might be led to believe.

"We'd like to believe that people know about HIV/AIDS, but there's probably a lot of people that don't understand it," Morgan said.

Education then and now: Educating South Dakotans about HIV and AIDS was a struggle in the early days. Johnson said her family was constantly referred to different doctors for information. "It was hard to find information," Johnson said.

Finally, they met a doctor in Sioux Falls who had just recently moved from the East Coast.

When Jensen was getting training a decade ago, the state had to send her all over the country to talk with people who had either been affected by AIDS or were knowledgable on the subject.

Today, more information about the disease is available than there was 25 years ago when the first case of AIDS was reported in the United States in 1981. Through national ad campaigns, health classes and local community groups, more information than ever is available on the disease.

But just because the information is there doesn't mean people are paying attention.

"People in the state don't perceive it as a major issue," Jensen said because there isn't a large amount of cases. However, last year the state reported the most cases of HIV/AIDS since 1995.

They do feel that younger generations are more knowledgeable about the disease and are taking preventative measures to ensure they don't get AIDS.

High-profile case: But Johnson added that the public may have become complacent because there hasn't been a high profile individual with the disease in a while.

When former basketball star Ervin "Magic" Johnson announced in 1991 that he was HIV-positive, he gave a face and a name to a disease people really didn't know much about. Still alive 15 years later, he is proof that it is possible to remain a productive member of society while carrying the disease. He has also shown the disease isn't the death sentence it was once believed. However, his continued health is both a blessing and a curse: It gives those with the disease hope, but it might give others the idea that the disease isn't as bad as everyone once thought it was. Because of this, people might take a more lackadaisical attitude towards the disease and their chances of getting it through unsafe behavior.

"They have to feel there's a personal risk to them," Morgan said.

Further, some people might view HIV as a manageable disease because of medical advancements, so "it helps people rationalize unsafe behavior," Morgan said.

Johnson agreed, saying that people see medical science helping people with AIDS, so they keep up unsafe behaviors such as unprotected sex or intravenous drug use.

However, that's not to say that medical advancements haven't done wonders for HIV patients. Morgan said if a person is diagnosed early, through a series of drug treatments, he or she could stave off getting full-blown AIDS for seven years or more. The general time frame from getting HIV to having AIDS is generally about three to five years, but some people can go longer without developing AIDS, which is why Morgan stresses early evaluations of people who think they might have the virus.

Ignored symptoms: Helgerson, Johnson's brother, had never been diagnosed with HIV while he lived in New York. But Johnson said the family found out later that he'd had several spells where he would get exhausted, but he figured it was because he was working too hard.

Finding out that her brother had AIDS came at an already emotionally draining time for Johnson -- her sister had died the previous summer. Helgerson had moved back to South Dakota after their sister's death, to live with their parents in Custer where they had retired to.

But he started getting progressively sicker. Doctors initially thought he had pneumonia and kept him in the hospital to monitor him. While Johnson and her family were sitting at a local restaurant, someone asked if they had heard about "the guy that had AIDS" at the hospital.

When the family went back to the hospital, her brother had been moved into an isolation room. Nurses and doctors helping him wore double sets of rubber gloves and booties. One nurse entered the room wearing an x-ray protection vest.

"People were so fearful," Johnson said.

The news spread like wildfire throughout the community, and Johnson said she found out who her true friends were.

After he was diagnosed, Johnson said she went through the stages of grief -- initially she was angry, then she moved to bargaining with God for her brother's life so that he would be able to live until Christmas, which was an important holiday for the family.

"There's no timetable for grief," Johnson said. "Just a process."

Necessary education: Now, Johnson continues her crusade to educate people about AIDS. Before embarking on their student teaching duties, NSU education majors take part in the seminar put on by Johnson and Jensen every year. South Dakota used to require certified teachers to complete a six-hour HIV/AIDS workshop, but that was dropped several years ago.

Jensen also speaks with school districts to make sure they have a plan in place to deal with students who have HIV/AIDS so they aren't ostracized.

Johnson and Jensen say educating people so that they don't react with fear is the goal of their courses -- as is prevention.

"I feel very passionate about it," Jensen said, "because if something I said or did helps just one person not get HIV, it's all worth it. One person, one family, one anything."

For further information on HIV/AIDS in South Dakota, visit the Department of Health's Web site at http://www.state.sd.us/doh/ or by calling the Centers for Disease Control National STD and AIDS Hotlines at 1-800-342-2437.

If you think you might have HIV or AIDS, contact a physician or contact one of the state's six HIV/AIDS counseling and testing sites in Aberdeen, Rapid City, Sioux Falls, Dupree, Watertown and Pierre.

Symptoms of HIV/AIDS complex

According to the National Institute of Allergy and Infectious Diseases, human immunodeficiency virus or HIV -- the virus that causes acquired immunodeficiency syndrome or AIDS -- is not automatically noticeable. Early symptoms may not appear for two months or more after a person is infected. A flu-like illness is usually the first indication and includes the following symptoms:

-- Fever

-- Headache

-- Tiredness

-- Enlarged lymph nodes (glands of the immune system easily felt in the neck and groin)

Those symptoms can disappear after a few weeks and can be mistaken for other viral infections. After the initial infection, HIV is present in large quantities in genital fluids. More severe symptoms may not appear for up to 10 years but it doesn't mean the virus isn't wreaking havoc on a person's immune system by killing blood cells that are the body's main infection fighters. The virus can kill these cells without causing further symptoms.

As the immune system worsens, more severe symptoms of HIV become noticeable. The first is swollen lymph nodes or "swollen glands" that last for several months. Other severe symptoms, according to the NIAID, include:

-- Lack of energy

-- Weight loss

-- Frequent fevers and sweats

-- Persistent or frequent yeast infections (oral or vaginal)

-- Persistent skin rashes or flaky skin

-- Pelvic inflammatory disease in women that does not respond to treatment

-- Short-term memory loss

These can be experienced for several months to several years before full-blown AIDS sets in.

AIDS: AIDS is the advanced stages of HIV. The CDC defines a person as having AIDS as those that have "fewer than 200 CD4+ T cells per cubic millimeter of blood. Healthy adults usually have CD4+ T-cell counts of 1,000 or more." The CDC also lists 26 clinical conditions referred to as opportunistic infections that don't normally affect a healthy person. Some symptoms of those infections include:

-- Coughing and shortness of breath

-- Seizures and lack of coordination

-- Difficult or painful swallowing

-- Mental symptoms such as confusion and forgetfulness

-- Severe and persistent diarrhea

-- Fever

-- Vision loss

-- Nausea, abdominal cramps, and vomiting

-- Weight loss and extreme fatigue

-- Severe headaches

-- Coma

People with AIDS are also especially prone to developing cancers.

There is not a set timetable as to how long a person with AIDS can live.

Reporter Bill Wambeke; (605) 622-2316 or 1-800-925-4100 ext. 316; bwambeke@aberdeennews.com

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Copyright (c) 2006, American News, Aberdeen, S.D.

Distributed by Knight Ridder/Tribune Business News.

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Source: American News (Aberdeen, S.D.)

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