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  • Reflection on Liver Capitol Hill Day Visits

        Wednesday I participated in the Liver Capitol Hill Day Visits sponsored by the American Association for the Study of Liver Diseases (AASLD). I wanted to write this reflection to demystify Hill visits for those that are reluctant to participate or feel that they are not particularly political or up on on the legislative issues. I would certainly put myself in that category, but I am an HBV advocate, and I recognize that there are simple ways I can participate that might make a difference for those living with HBV in my state and in our country. Liver Capitol Hill Day was a well organized event with specific "talking points" and "asks", and the logistics were very well coordinated, but in general the individual visits themselves were the same as others where I have participated. If you are in D.C. and wish to visit with your Representative or Senator's office, I would highly encourage it. They want and need to hear from their constituents, and if you have a personal story to tell, that's even better. Call your Representative's or Senator's office and ask to make an appointment with the staff member that handles health issues. If you are not sure who your Representative is, merely type in your zip code at www.house.gov. To determine who your Senators are go to www.senate.gov and select your state from the drop down member. Call them and set up an appointment. If you are looking for specific talking points, you could consider contacting an organization like the Hepatitis B Foundation, AASLD or other viral hepatitis organizations that might be able to provide you with some ideas for your visit. It is very unlikely you will even catch a glimpse of your Representative or Senator, so don't worry about feeling nervous. The Staffers are accustomed to constituents coming in with their requests. There is nothing formal about the meeting and often you are crammed in a closet-sized room with a desk and a chair, or meeting wherever there is space.  This is

    http://www.hepb.org/blog/reflection-on-liver-capitol-hill-day-visits/
  • Sheree Martin Retires from the Hepatitis B Information and Support List

    After 13 Years, our Mammablondie has retired as a listowner of the Hepatitis B Information and Support List.  Sheree Martin has been List Mom to thousands of hepBers who have come to us from all over the world.  Like a true mother, she was quick to give hugs, the cyber kind, just when we needed them most.  And when we squabbled, she was there to call "time out". As for the "information" component of our list, Sheree has contributed more than anyone else.  She has spent countless hours scanning the Internet daily for HBV research and news.  The result of her efforts is our Hepatitis B Research List. For those wishing for information only, you can select send a blank email to HBV_Research-on@mail-list.com For a number of years the PKIDS organization hired her to do the same thing for them, provide them with daily bulletins about kids' infectious diseases. Sheree donated the money she earned to our listserv in order to cover miscellaneous  expenses. In the beginning days of the List, John Kirk and I recognized immediately what a gem Sheree was, and we invited her to join us as a third listowner. She was smart, she was a nurse, she had IT skills, she was a good writer, and she knew how to referee when the two male egos would wrestle. Sheree lives in the same small town where she grew up, on the edge of the Appalachian Mountains.  She's proud of what she calls her hillbilly roots. We all got to know and love Sheree's mother, Yvonne, when she accompanied Sheree to the Hepatitis B Foundation's patient conferences.  Not only did Yvonne have HBV, but in 1999, Sheree's only sibling, Mike, died of liver cancer associated with HBV.  Fighting HBV was a very personal battle for Sheree. We'll need two people to fill Sheree's shoes on the List.  Yvonne Drazic (Australia) will be our new listowner, and Christine Kukka (Maine) will take over the Research List. At home in that picturesque country village, Sheree will have more time to do what she loves most--  being a

    http://www.hepb.org/blog/sheree-martin-is-retiring-from-the-hepatitis-b-information-and-support-list/
  • Off to College With Hepatitis B

    Are you ready to head off to college?  Are you concerned about your HBV status?  Here are a few things to consider… If you live in the U.S. your roomate(s) will most likely be vaccinated for hepatitis B, so you shouldn’t need to worry about disclosure.  Later on in your relationship you can decide whether or not you want to disclose your HBV status to your roommate, other friends, or SOs.  For now it’s probably best to keep it to yourself.  Once the info is out, you cannot take it back. If you are sexually active you will want to consider how you will handle these relationships.  HBV is spread through vaginal or anal sex so you want to be sure to practice safe sex for the benefit of both you and your partner.  Please use a condom to ensure there is no transmission of STDs and other infectious diseases.  There is a vaccine for hepatitis B, but not for HCV and HIV.  If you are living with HBV, you are well aware that you do not want an HBV coinfection with either HCV or HIV.  Coinfections are more complicated and more difficult to treat and manage.  Play it safe and use a condom. It’s great to be on your own at college.  Days and nights learning, studying and preparing for a bright future, branching out on your own... away from mom and dad.  Quite often it’s time for a little experimentation, a little craziness, or just plain fun. It’s a time to interact with lots of different kinds of people.  Sometimes you have control over these interactions and sometimes you don’t.  You can’t control all of these things, but you can control parts of your own little environment. Get yourself a bag for your personal toiletries.  Whether you’re using bathroom and shower facilities on the dorm floor, living in a quad, or sharing an apartment with roommates, you’ll want to be sure to keep your personal items in a separate bag and out of sight of floor mates, roommates and visitors. We all know that HBV and other infectious agents are transmitted via

    http://www.hepb.org/blog/off-to-college-with-hbv/
  • A Brave Hepatitis B Activist in China

    I have been active in the HBV community for over twelve years, and during this time and I have been fortunate to make the acquaintance of some wonderful people, many who I consider good friends.  The story below was relayed to me by a friend, though it’s possible you may have seen it in the Chinese news. This is a story about a very brave, Chinese girl with hepatitis B.  She studied in Japan, got her Masters, and married a PhD from China. Last year, she took all her savings, about 10,000 Yuan, with the blessing of her husband who was finishing his thesis in Japan, and went back to China. For the next twelve months, she traveled to major cities in China, all by herself. At each stop, she held up a placard with a sign inviting passersby to have dinner with her, a person with hepatitis B, and that she would pay for the dinners - You eat, I pay. Of course, she repeated her story to the media to emphasize that it is safe to eat with a person that has HBV. A few nights ago, she appeared on CCTV, with another young hero, and they demonstrated how shaking hands with a person with HBV will not pass on the virus.  There was instant testing of the cloths wiping the hands of the infected women. Of course, they tested their saliva too, since Chinese people use chopsticks, and pick food from common plates. All this was presented in front of a live audience, and millions of viewers at home. It brought tears to my eyes. The original graduate from Japan has stopped touring and is now making a documentary. Her husband left Japan on a boat to return to China, the day before the earthquake struck.  He is now home with his wife. However the baton is taken up by another young Chinese lady, with the support of the other activist, and the tour is on again. The actions taken by these young, Chinese activists are inspiring, and are true acts of bravery - especially in a country like China, where HBV discrimination is rampant.  Perhaps we are not all comfortable going public

    http://www.hepb.org/blog/a-brave-hepatitis-b-activist-in-china/
  • Happy 20th Anniversary to the Hepatitis B Foundation!

    Hepatitis B Foundation 20th Anniversary Gala   Join the Hepatitis B Foundation with this short, fun, YouTube video with great snapshots and music as the Hepatitis B Foundation  celebrates its 20th Anniversary.  The Hepatitis B Foundation is the only national non-profit organization solely dedicated to the global problem of Hepatitis B.  If you want to know more about HBF, check out our mission and story.  We've had some great accomplishments over the last year, so take a moment and review our  2010 annual report, and see what contributions HBF has made to hepatitis B research, outreach, and advocacy.

    http://www.hepb.org/blog/happy-20th-anniversary-to-the-hepatitis-b-foundation/