Having a chronic hepatitis C infection can affect a person’s day-to-day life more than you may expect. Hepatitis C is the most common blood-borne virus in the United States, with more than 3 million people infected, according to the Centers for Disease Control and Prevention (CDC). But even with such high numbers, patients feel there’s a lot of misinformation about this infectious disease.
Here’s what people diagnosed with hepatitis C want you to know about their illness:
1. Hepatitis C is a serious disease. “You can’t put your head in the ground,” says Joe Benko, 64, an Army veteran from Allentown, Pennsylvania, who learned he had the virus while donating blood. “If you have hepatitis C, you have to be proactive and approach it. That’s the only way to get rid of it.”
Though a hepatitis C infection can go away on its own in a small percentage of cases, about 75 percent to 85 percent of people who get it develop chronic hepatitis. The illness progresses over time, damaging the liver, explains theAmerican Liver Foundation. Hepatitis C can lead to liver cancer and liver failure,according to the CDC, and is the No. 1 reason for needing a liver transplant.
2. Many people with hepatitis C don’t know they have it. Benko says he didn’t have symptoms that suggested hepatitis C. He was floored by his diagnosis. “I didn’t believe that I really had it, and that was the frustrating part,” Benko says. “It was hard to digest.”
Getting a simple blood test is the way to find out if you’ve picked up hepatitis C sometime in your life. One-time screening is now recommended by the U.S. Preventive Services Task Force for all Americans born between 1945 and 1965, because people in this age group were most likely to be exposed to the virus. You are also at risk if you received donated blood or organs or used blood products like those used to treat hemophilia before 1992, when health workers began to screen for the virus. Using injection drugs — even once in the past — also puts you at increased risk for hepatitis C, as does getting a tattoo in an unregulated setting, like from a friend. Anyone exposed to blood from a person with hepatitis C is at risk for infection and should also get screened, the CDC says.
3. Being aware can help prevent the spread of the virus. “You have to be careful about your blood transferring to somebody,” Benko says. “It’s something I had to be very aware of. It made me upset and depressed at times, but I had to be conscious about it to prevent exposing others.”
Though hepatitis C is passed through blood, the virus is also able to survive in blood outside the body. According to the CDC, it can live for up to four days on contaminated surfaces at room temperature. Because of this, even dried blood can be infectious. If you have hepatitis C or live with someone who does, don’t share anything that might have even traces of blood on it, like razors or toothbrushes, warns the Department of Health and Human Services.
4. If someone has hepatitis C, it’s not their fault. “The stigma surrounding hep C is an additional burden for the disease sufferer,” says Marti MacGibbon, an inspirational speaker and addiction treatment professional who had hepatitis C. “There is nothing to be ashamed of,” she says. Hepatitis C is passed along by contact with infected blood, which can happen in a healthcare setting with an accidental needle stick, when a healthcare worker is helping someone who’s bleeding from an injury, or even when a worker comes in contact with a bloody bandage. Don’t assume the infection came from IV drug use.
Benko’s doctors think he could have contracted the virus when he had medical attention for a deep foot wound as a youth, or during his time in the military, when he got numerous shots. “It could have happened when I was 10, or when I was 18 in the military,” he says. MacGibbon was in her forties when she was learned in 1997 that she had the virus. Doctors believe a blood transfusion she received during a complicated knee surgery in the early ’80s was likely the source of transmission.
5. Hepatitis C can be cured. “This disease is treatable, and it’s beatable,” says MacGibbon, who was declared disease-free in 2005. Don’t let shame or fear keep you from getting tested. Early detection increases your chances for successful treatment. “Even if you’ve received a serious diagnosis, be tenacious and never give up on living a healthy and happy life,” MacGibbon says.
Benko was given the all-clear in December 2013, and he calls the news his “best Christmas gift ever.” Drugs to treat hepatitis C lead to a cure for over 90 percent of patients, and include Olysio (simeprevir), Sovaldi (sofosbuvir), Harvoni, and Viekira Pak, with more new options on the way.
6. People with hepatitis C need help and support. When Benko was diagnosed in 1990, he remembers being handed a VHS tape about one type of treatment and being told to review it. There were no options to discuss or support groups to join. He says at times he felt depressed and frustrated. Now, the Internet has a wealth of information, he points out.
If you know someone who has the virus, you can help by just being there. Sometimes just knowing someone cares enough to listen can be the boost needed to get through a tough day. Use resources like the American Liver Foundation or the CDC to educate yourself about the virus so you can better understand what a friend or loved one is going through.