Herpes healing comes in numbers

Those afflicted with herpes or HPV find plenty of support -- and a path toward a happy, normal life

Staff writerAugust 4, 2009 

  • Herpes

    The virus: Herpes simplex virus I and Herpes simplex virus II

    Symptoms: Both viruses can produce oral, genital or rectal blisters that look like white bumps surrounded by a red halo. Blisters can commonly be mistaken for ingrown hairs or razor burn.

    Transmission: HSV-1 can be transmitted through kissing or sexual contact, HSV-2 is commonly transmitted through intercourse.

    Testing: Herpes screening is not included in an STD test. If a patient has an active blister, a physician can do a culture. If a patient has concerns about herpes, a blood test can be specially requested.

    Prevention: Abstaining from kissing and sexual contact during an outbreak of the blisters reduces the transmission risk.

    Treatment: Daily suppression medications like Valtrex, Famvir and Acyclovir can reduce the severity and frequency of outbreaks, or blisters, that can spread the virus.

    Be aware: Condoms don't necessarily prevent transmission. The viruses are transmitted through skin contact and can be spread through the exposed genital-area skin.

    HPV, human papillomavirus

    The virus: HPV is among the most common sexually transmitted infections.

    Symptoms: Most strains of HPV have no symptoms. Men and women infected with low-risk HPV may get genital or rectal warts. High-risk HPV can cause cervical cancer in women and other rare forms of cancer.

    Transmission: Sexual contact.

    Testing: Regular Pap smears can detect high-risk HPV and cancerous cells in women. There is no test for men.

    Treatment: There is no treatment for low-risk HPV. The body's immune system will fight and clear infections from 90% of cases.

    Prevention: The Gardasil vaccine protects women against four types of HPV, including cancer-causing strains. There are no effective preventive measures for men.

    Be aware: The myth that men don't show symptoms is wrong; they get warts, just like women. Condoms do not necessarily prevent transmission.

    Sources: Centers for Disease Control and Prevention; American Social Health Association

  • The virus: Herpes simplex virus I and Herpes simplex virus II. HSV-1 can be transmitted through kissing.

    The numbers: At least 45 million people in the U.S. have had the virus. There are no breakdowns by state.

    Human papillomavirus

    The virus: HPV includes up to 40 different types that affect the genitals.

    The numbers: About 20 million people are currently infected. Fifty percent of sexually active people will contract some form of HPV, but most cases will go undetected, experts say.

Seven years ago, Pam Wisniewski stood in her doctor's office and got some news she thought would ruin her life.

"You have genital herpes," a physician's assistant told her.

Wisniewski started sobbing. "I felt like I was going to be alone for the rest of my life," she said. Her dream of marriage to the perfect man and children faded.

"It was devastation at that point," she said.

Today, Wisniewski is living the dream she thought was lost. She and her husband, Mike, are approaching their one-year anniversary and plan on starting a family soon.

And she's helping others make the same transition.

The 29-year-old UNC Charlotte doctoral student moved to Charlotte in 2005 and started a support group for herpes and human papillomavirus, or HPV, patients.

She thought it might end up as "a group of 50 people who went out to a movie now and then," she said. Today, Charlotte H has 1,100 members, and it keeps growing.

At least 45 million people in the United States have had herpes simplex virus, and most don't know it, according to the federal Centers for Disease Control and Prevention. During an outbreak, patients can experience painful blisters and sometimes flulike symptoms early on. The virus is transmitted through kissing, oral sex and intercourse. Herpes can even spread when a couple uses a condom, because the skin around the protected genital area could be infected.

About 20 million people have HPV, which causes benign warts in men and women and sometimes cervical cancer in women.

For those living with herpes or HPV, healing comes in numbers.

As support groups grow, members are transforming their experiences into lessons for the newly infected or longtime fighters suffering alone. For them, herpes and HPV aren't life-stoppers.

Here are some of their stories.

Carla: The diagnosis

Carla, who requested that her last name not be used, started dating a man she met in a divorce support group after her 10-year marriage ended.

Both had initially tested negative for sexually transmitted infections. But routine tests don't detect herpes unless a blood test is requested. Her partner, who did not have any symptoms, unknowingly gave her herpes, even though they were using condoms.

Carla, 36, got tested for herpes when painful genital blisters erupted. The results were negative and she was sent home with a topical cream, but she tested positive after a second outbreak. "It was a little bit to deal with coming off a marriage," she said.Dr. Lena White at the Mecklenburg County Health Department said a classic blister has a white head with a red halo around it. By the time many patients visit their doctors, the lesion may have subsided. "Sometimes doctors don't have enough evidence to make the diagnosis," she said.

Carla, an active member of the Charlotte-based Carolina H support group that started in March, is now in a long-term relationship. "The group keeps you grounded," she said.

John: Feeling trapped

John, 40, contracted herpes from his girlfriend, who hid her secret from him. He had a reaction many have when they're diagnosed: He thought he might as well marry her, because no one else would want him. John also asked that his last name not be used.

"At that time, not knowing anything or without doing any research, I thought we were the only two within three states to have herpes," he said. In fact, a lot of people who are diagnosed limit their dating to stay within the herpes community.

John joined a support group after ending his relationship. He made friends quickly and is now dating a Carolina H group member.

"There's someone there that you're going to relate to and who can show you the ropes" on navigating a new life, he said.

Vicki: The isolation

Vicki, a 25-year-old decorator, finally feels free to hold her Halloween parties again.

But after she was diagnosed at 23 with HPV and herpes, she had isolated herself.

She said she contracted HPV from her husband. Eventually, the marriage fell apart, they divorced and she lived like a "hermit" for seven months after moving back in with her parents.

"My dad was even trying to get me out of the house," she recalled.

One day, Vicki said she woke up and was ready to move on. When she disclosed her condition to her family, she felt instant relief.

"This is me," she said. "Being open with my family made me feel so good." She got her own apartment and slowly started socializing. She posted profiles on dating sites and joined online support groups. Hesitant to go on dates, Vicki stuck to online chatting, but soon that wasn't enough.

Vicki said she finds Carolina H meetings and outings therapeutic, "Suddenly, I wasn't the new kid at the lunch table eating by myself, " she said. She's dating a group member and it's getting serious.

Nadine: The talk

Nadine Murchison, 36, takes a self-proclaimed "radical" approach when disclosing her infection to dating partners.

She puts her herpes management book on the coffee table, alongside her suppression medication, for her date to see right when he walks in the door.

"I figure it's a part of who I am," she said. "If you're going to get to know me, you're going to find out one way or the other."

Disclosing the news, known as "the talk," can be just as emotionally taxing as the diagnosis itself, group members agree. Experts advocate having the talk early in a relationship to avoid transmission.

Murchison has told several people since she contracted herpes in 1998, but no talk has been more important than that with her two children. She told each when they were in fifth grade.

"I wanted them to understand that not everybody [who gets infected] is sleeping around or using drugs," she said.

The Charlotte H member said her daughter was very sympathetic while her son was curious and had a lot of questions. They looked at photos online and read personal stories together. Murchison stopped hiding her suppression medication.

"I wanted to be an example," she said. "When you're trying to disclose your story, you have to be comfortable within yourself before you can tell other people."

Strength in numbers

For members, support groups are a chance for lessons and friendships. Some meetings are more social; others are educational. Charlotte H and Carolina H have scheduled gatherings or activities a few times a month.

"Sometimes we talk about it maybe one percent of the time," said Kirk, a Carolina H leader. "We talk about our group of friends probably two or three times a day."

agarciaditta@charlotteobserver.com

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