Las Vegas Sun

January 18, 2018

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Support group takes away hepatitis’ stigma


Two years ago Jody Lewis thought hepatitis was a rare disease, certainly not something the mother of two nearly grown boys needed to worry about.

Today she battles daily fatigue caused by the virus.

Lewis, founder of the Hepatitis Education, Prevention and Awareness Foundation in Las Vegas, travels to valley schools, women's prisons and juvenile detention centers to educate those at risk. She informs the audience that the virus can be spread through tattoo ink, body-piercing equipment and even nail manicures -- facts that never fail to surprise.

"People think they can just get it through IV drug use, but there are so many ways to contract this disease," Lewis said. "This is preventable."

Recently HEPA formed a weekly support group, which meets at the Center for Independent Living in North Las Vegas. The group's intention is to build a network of those infected -- and affected -- by the virus.

"It helps me to cope with the virus day to day knowing other people with the same disease," Lewis said.

Hepatitis is a virus that causes inflammation of the liver. It can cause liver-cell damage, which can lead to cirrhosis and cancer.

It is contracted through contact with infected blood, contaminated IV needles, tattooing or body-piercing equipment, razors and can be passed from an infected mother to her newborn. It is not easily transmitted through sex.

To prevent contracting HCV, the Hepatitis Foundation International advises to clean up spilled blood with household bleach and wear gloves. Do not share razors, toothbrushes or needles with anyone. Be wary of tattoo needles and body-piercing equipment, which although cleaned with sterilizing solutions could still hold the virus.

There is no vaccine or cure. Patients are usually treated with medications to alleviate symptoms and boost the immune system.

The disease is a sobering reality, said Lauren Blackenstock, co-director of HEPA.

"It's really scary," she said, "but basic cleanliness will prevent you from getting it."

More than 36,000 people are infected with hepatitis C and don't realize they can transmit the disease through, say, simply by having their nails manicured with infected tools and solutions, she said.

"It's a blood-born disease and it can live for 30 days outside the body," Blackenstock said. "Alcohol doesn't sterilize it so it can be in tattoo ink, nail polish and you don't know."

HEPA is currently looking for permanent office space to be donated so that it may hold lectures and offer support to what has been called a silent epidemic, Blackenstock said.

The Clark County Health District does not keep records of those who have chronic HCV.

Dr. Rose Lee Bell, epidemiology manager for the health district, said the county is beginning to keep a registry of those who have tested positive for the virus.

There was no test for Hepatitis C in the blood supply until the past decade, Bell said. Anyone who had a blood transfusion before 1992 is at risk for the virus, which can take up to 20 years to begin to show symptoms.

"A number of people who were infected years ago through no fault of their own are coming to the surface needing medical care," Bell said.

New cases of HCV are usually caused by intravenous drug users, cocaine users and those who have been exposed to blood contact with an infected person through such simple means as sharing a toothbrush.

"A lot of this is an educational process to get people not to share those kinds of personal items," Bell said.

Lewis was an executive administrator for a health care research firm before she was infected by her ex-husband through blood contact.

She moved to Las Vegas in 1999 to be closer to her two sons, David, who will graduate from Palo Verde High School next week, and 23-year-old Adam.

Life was on track for the active, single, 40-year-old woman.

Then the flu-like symptoms began. She was fatigued, nauseated -- and worried.

Lewis' ex-husband told her she should be tested for hepatitis C. He had not revealed that he was infected with the virus.

"I didn't know what hepatitis C was. I didn't know what I was up against," Lewis said. "I didn't know if it was life or death."

Lewis was tested by her doctor, who sent her to a specialist. Lewis learned that within months of initial contact with her ex-husband, she began to show symptoms.

"I'm unusual because most people can live with this for 20 years and not know it," Lewis said. "I'm a nonresponder."

She is one of 2 percent of those infected who do not respond to treatment.

"I was devastated," Lewis said.

Her body was deluged with different medications to alleviate her symptoms. Nothing seemed to help. Lewis began to realize the seriousness of her condition.

"It's changed every aspect of my life," Lewis said, "financially, physically and emotionally."

For the past two years Lewis has been continuously ill with flu-like symptoms. She suffers from constant headaches, joint aches and liver pain, which is a dull ache in her right side.

"It's put my life on a one-day-at-a-time basis," Lewis said. "They say it's like the flu, but it's the worst flu I've ever had. Over and over."

Lewis turned to her family for support. But as she became more aware of the virus, and how easily it can be spread, she reached out to other HCV sufferers by forming HEPA.

She wanted to do something to be active, again.

"I wanted to remove the stigma of this," Lewis said. "I wanted people to understand."