How YouTube Helps People Cope With Hepatitis C

The video platform is an outlet for those battling stigma along with a brutal treatment process.


YouTube has served as an online support group for hepatitis C patients like Petra Hoffman.

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In a video uploaded to YouTube in March 2010, Petra Hoffmann told the world how, in a fit of rage, she punched her boyfriend Eli in the face.

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Hoffman, a Vancouver, British Columbia resident, was going through an intense treatment for hepatitis C at the time of the incident and had been warned that a common side effect of one of her drugs, Interferon, is sudden rage or even psychosis. In fact, as she says in the video, she had just attended a support group, where couples discussed "the rage and the emotional upheaval" the disease causes for patients, caregivers and spouses. On the ride home, Hoffman repeated to Eli what she heard from the couples and he responded that "he doesn't see that in me and he doesn't think that's going to happen to us."

But the next day, Hoffman confesses in admitted embarrassment, she "beat the crap out of my boyfriend." "He lied to me about something and it snapped in my head," she says. "And the next thing I know I was on top of him. The adrenaline, I could have lifted up a car. I wasn't scared. The rage just hit me and I was on him and hit him with a phone that was in my hand." The same thing happened the next day when Eli tried to take her computer. "I was on top of him and pounding him in the head," she recalls in the video.

It's estimated that up to 200 million people worldwide are infected by hepatitis C, a virus that mainly affects the liver. In the United States, it's only surpassed by chronic alcoholism in causing cirrhosis, liver failure and liver cancer. Though the disease can lead to death, those infected can go decades without symptoms and, partly because doctors don't often run tests for it, many people go undiagnosed.

Hoffman's video is one of hundreds uploaded to YouTube over the past few years by those diagnosed with hepatitis C. In many of these recordings, the person is undergoing a grueling, painful treatment with the hope they will be among the 50 to 80 percent of patients who can be cured. They record their experience in order to help break the stigma associated with hepatitis C and communicate to those who are too ashamed or scared to reach out for support. As Hoffman says in the video, "If I don't share this with you, maybe you won't know what you're about to go into. That's why I'm doing this and telling you the most embarrassing moments."

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Because the virus is spread by blood-to-blood contact, it's often assumed that those infected contracted the disease from intravenous drug use, but it's also commonly spread through blood transfusions, tattoos, or any method by which a person is exposed to another person's blood. In October 2012, the CDC put out an official recommendation that all baby boomers get tested for hepatitis C, and some experts believe that up to 75 percent of those infected fall within this generation.

"They were infected by hepatitis C before we knew what hepatitis C was," says Dr. Nancy Reau, a hepatologist who is on the board of directors for the American Liver Foundation. "Everything from dental procedures to medical interventions to hair cuts could have put them at risk. It's a blood-borne disease, and a long time ago, hairdressers didn't put all their combs in a little jar of blue goo. Your dentist may not have autoclaved his utensils. He might have cleaned them nicely and put them out and used them again. Until you knew that was a bad idea, there was no reason not to do it."

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Reau graduated medical school in 1996, just as the first treatments for hepatitis C were introduced. At the time, she says, patients had only a six percent chance of being cured. Today, treatment typically includes a six-to-12 month combination of both Interferon and Ribavirin, drugs that in tandem can invoke a brutal set of side effects that often leave the patient incapacitated. Interferon, which is what the body produces to fight off flu infections, is an intolerable drug on its own. It often induces flu-like symptoms, including fever, muscle aches, nausea and headaches. When you add Ribavirin, an anti-viral drug, patients will experience everything from severe anemia to, in some cases, psychosis. "I had the sweetest little lady, who was like 60, pull a gun on her daughter," Reau recalls of one particularly severe case.