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May is Hepatitis Awareness Month

Hepatitis Awareness Month is dedicated to increasing awareness of hepatitis in the United States and to encourage high risk populations to get tested. If you’re not sure how you can get involved in the hepatitis B community this month, here are some ways you can!

  • Share and spread hepatitis B knowledge. CDC’s Know Hepatitis B Campaign is a great resource to learn more about hepatitis B and to promote testing in your area! They also have great posters, handouts, and videos available in different languages including Spanish, Mandarin, Vietnamese, Korean, French, and more! You can also look for some of the Hepatitis B Foundation’s fact sheets and #justB storytelling campaign videos.
  • Join or organize a screening event. May 19th is National Hepatitis Testing Day! Organizations around the country will provide viral hepatitis screenings – both hep B and C! Be sure to look for some Hep B United partners’ websites for screenings in your local area, especially if you’re interested in volunteering.
  • Organize or join a flash mob to increase awareness! With our local hepatitis B campaign in Philadelphia, Hep B United Philadelphia, we held a “B A Hero Flash Mob” in the past. It is a great way to open the discussion about hepatitis B in an engaging and fun way!
  • Become an HBV advocate! You can join our Hep B United Action Center to get all the updates on our advocacy efforts. You can also share your hepatitis B knowledge on social media too!
  • Check out and share Hepatitis Victoria’s Little Hep B Hero book and animation. Hepatitis Victoria created an engaging book to explain hepatitis B to six to twelve-year-old children. Their book is available to order and in English, Simplified Chinese, and Vietnamese.
  • Join the #HepAware Thunderclap. You can easily share and show your support for CDC Hepatitis’s efforts by joining their Thunderclap by May 19th, Hepatitis Testing Day. You can use Facebook, a Facebook page you manage, Twitter, and Tumblr.
  • Join our international #HepBeLIeVER Social Media Contest. Not only will you be spreading hepatitis B awareness, but you can also get a chance to WIN a $50 AMAZON GIFTCARD and other Hepatitis B Foundation swag. All you have to do is take a picture loving your liver and upload it to Twitter, Instagram, or Facebook with #HepBeLIeVER. More information here.

There are endless possibilities to celebrate this month! If you need even more ideas, CDC has a plethora of resources available dedicated to Viral Hepatitis Awareness month. You can also check out our Hepatitis Awareness Month webinar from Hep B United, NASTAD, and CDC or Hep B United and NOHep’s webinar: The NOHep Fight for Elimination!

People Affected by Hepatitis B Share Stories of Family Secrets, Stigma and Diagnoses That Came Too Late

Alan Wang of Berkeley, CA, describes how doctors failed to test his family for hepatitis B in his video story.
Alan Wang of Berkeley, CA, describes how doctors failed to test his family for hepatitis B in his video story.

In an innovative storytelling initiative, people living with chronic hepatitis B open their hearts and share their stories of family secrets, stigma and diagnoses that came too late as they confront the impact of hepatitis B on themselves and the people they love.

The Hepatitis B Foundation, working with StoryCenter, has created unique video stories that share the experiences of people affected by hepatitis B, which affects one-third of the world’s population. The video stories, which debut May 1 in recognition of Hepatitis Awareness Month, are designed to raise awareness about the liver disease that affects 2 million in the U.S.

There is no better way to understand the human toll hepatitis B takes than to hear directly from those affected. Most people know very little about this disease and up to 75 percent of people living with hepatitis B don’t know they’re infected. The hope is that these stories will put a human face on this infection and help improve testing, vaccination and treatment.

One storytelling video, featuring former ABC 7 News anchor Alan Wang of Berkeley, CA, talks about how doctors fail to test people for hepatitis B. It was after the CEO of Newsworthy Media suffered liver damage that a doctor tested him for hepatitis B. “It was only because I (had) a medical reporter friend who connected me to a leading hepatologist that I got the attention I needed,” Wang, 49, explains in his story. After his diagnosis, he encouraged family members to be tested and his mother and siblings were also found to be infected by the disease that is easily transmitted at birth.

justB“We were left to connect the dots because the medical profession is failing to address an epidemic that kills more than 700,000 people a year,” he explained. “It’s bad enough that hepatitis B is a silent killer with few symptoms until it’s too late. It’s also ignored by Asian cultures that consider talk about deadly diseases to be taboo.”

While a safe and effective vaccine that prevents hepatitis B has been available since 1982, many Americans did not have access to the vaccine. John Ellis Jr., another hepatitis B storyteller who lives in Pensacola, FL, was diagnosed with chronic hepatitis B at age 16. He, like many people living with hepatitis B, does not know how he became infected.

“When I was first diagnosed, I was shocked the doctor couldn’t tell me how I contracted it, as if finding out how I contracted hepatitis B would somehow cure me of it. As I grow older, what’s most important to me is maintaining my health.” Ellis explains in his story that he wants to be, “bigger than his diagnosis.” He does not want hepatitis to hold him back or define him. He is an entrepreneur and he has organized a charity bike ride to raise awareness and funding for research.

Another featured storyteller is pharmacist Bunmi Daramaja, of Elkridge, MD, who grew up in Nigeria and emigrated to the U.S. She struggled with her family’s reluctance to discuss her father’s death from liver cancer, resulting from chronic hepatitis B.

“Stigma is everywhere (in my African culture),” she explained in her story. “People don’t think about the facts of how the virus is transmitted– they are afraid to even touch someone who has it. Many people don’t even want to get tested, because treatment is either not available or costs too much money. They say, ‘What’s the point?’ This needs to change.

“In the U.S., the services are here, and I want to make sure that people of African origin know there are resources. I want to end this silence,” she explained.

The Hepatitis B Foundation’s Storytelling page helps tell the story about an infection in the U.S. that is under-diagnosed, under-treated and remains stigmatized across America.