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Living with Hepatitis B

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 with our information, but we can all work behind the scenes, and help raise global, HBV awareness.  Tell us your story, or share it on the World Hepatitis Alliance Wall of Stories.

 

Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B

Raw Shellfish Warning for those with Hepatitis B

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Summer is here, and it’s time for a smorgasbord of your favorite, fresh seafood.  All good, but if you have hepatitis B, you’re going to want to take precautions to ensure you don’t get sick, or even die, from the seafood that you eat.

There are a couple of variations on what is considered shellfish, but basically it includes oysters, clams, mussels, shrimp, crab, and lobster.  Oysters and clams are the only shellfish eaten raw, so they present the greatest danger.  Raw oysters are the main culprit, although all raw or undercooked shellfish from warm coastal waters, especially during the summer months, are a risk.  It’s difficult to ensure the origin of your seafood, despite labeling requirements, and whether or not it was frozen, or partially unfrozen at some time.  As a result, it’s best to treat all seafood equally.  And of course it’s not the shellfish itself, but rather a microbe called Vibrio vulnificus.  In fact this hearty microbe may exist in warm, salt-water directly, and care should be taken to avoid exposure of open wounds to potentially contaminated water.

V. vulnificus is very virulent with a 50% mortality rate.  The microbe may enter the blood stream via an open wound, or the GI tract where it may cause sepsis.  This is especially perilous for people that are immunocompromised, or have liver damage due to chronic infections such as viral hepatitis – specifically hepatitis B.  Symptoms may include fever, chills, vomiting, diarrhea, and abdominal pain.  It is very serious, and may lead to septic shock and death.  Septic infections are carry a high mortality rate of 50% in individuals without liver disease.  Those that are immunocompromised or suffer from liver disease are 80 to 200 times more likely to develop septicemia from V. vulnificus than those without liver disease.  Those are pretty serious odds.

Please keep in mind that this is not to be confused with basic food poisoning from “bad seafood”.  There are no visible signs of the bacterium.  Contaminated shellfish smell and taste fine.  If you believe you may have been infected, you need to seek immediate medical attention.

If you must eat shellfish, please follow precautions.  Be sure shellfish are thoroughly cooked.  Cook all oysters, clams and mussels until the shells open and continue boiling for five additional minutes.  If steaming, cook for an additional nine minutes.  Boil shucked oysters for at least three minutes, or fry them in oil for at least ten minutes at 375 degrees F.  Wear protective gloves when handling and cleaning raw shellfish, and avoid exposure to open wounds.  (This warning actually includes exposure of open wounds to infected waters, so be careful when vacationing.)  Take care to keep raw seafood and all other foods separate.  Eat when cooked, and immediately store leftovers in the fridge.

I’ve never been a fan of raw shellfish, and with my HBV awareness, I instilled a sense of fear in my children regarding raw shellfish, or any raw seafood.  If it’s got a shell – especially oysters, clams and mussels, they don’t touch it, and they gag at the sight of raw seafood.  Okay, so maybe I carried that a bit too far, but at least I can check that one off my danger list. V. Vulnificus is dangerous! If you have HBV, it would be best to avoid shellfish.

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Living with Hepatitis B

Show Your Support for World Hepatitis Day!

World Hepatitis Day is Thursday, July 28th!  Join the World Hepatitis Alliance.  The theme is “This is Hepatitis”, which is aimed at raising global awareness.  Globally, two billion people have been infected with hepatitis B, (one out of three), and 400 million live with a chronic, lifelong infection.  Although there are excellent treatments available, there is no cure for hepatitis B.  However, there is a safe and effective HBV vaccine.  If you are infected, be sure loved ones and household contacts are screened and vaccinated.  If you are not infected or not vaccinated, get vaccinated and help eliminate the spread of this virus, worldwide.

Show your support by adding a World Hepatitis Day PicBadge to your facebook and twitter profile pictures.  This makes a great visual statement.  You can also add the widget to your website or blog.  Take a look at HBF’s website, and note the slider at the top with “World Hepatitis Day”.  Check out the details on how to add the World Hepatitis Day PicBadge to your profiles and website.  Select the “add to profile picture” button.  Follow the instructions and the badge will be added to your FB and/or twitter profile pics.  (FYI.. I use hootsuite to manage my tweets, and it wasn’t initially obvious that it picked it up, but it worked fine. )  Check out HBFs FB and twitter profile pics to get an idea of how it looks.  Once you make the modifications, the PicBadge program will post the badge to your wall and tweet an invite to others to join with their support.  You can also have picbadge send a request to FB friends so they may lend their support.

On a personal note, consider sharing your story on the World Hepatitis Alliance’s “Wall of Stories”  Please feel free to share your story in your native language.  The more personal the stories, the better!

Be sure to let us know what you or your organization is up to for World Hepatitis Day!  No contribution is too small in the fight against viral hepatitis!

Hepatitis B Prevention

Sending Your Child to Camp with HBV

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Got a camper in your house with HBV?  Are you concerned about filling out the mountain of paperwork associated with sending your child off to a day camp, or over-night camp this summer?  The paper work is not consistent from camp to camp, and quite often probing health questions may be asked.  If you’re a parent with a child with HBV, seeing it in print will likely be unnerving.

Camp forms will have a health history section which may start with the following:

Does the camper have a history of any of the following?  Check all that apply.

A long list of conditions including things like asthma, diabetes, migraines, surgery, and physical disabilities may be on the list, along with the possibility of “other” accompanied by a blank-line.  It is also possible there will be a box specifically for hepatitis B.

Personally, I would NOT check the “other” box, nor would I list hepatitis B on the line following “other”.   I would also NOT check the box if the medical history specifically refers to hepatitis B, or viral hepatitis.  I would also not consider my child’s liver biopsy as a “surgery”. There is NO need to offer up unnecessary information that does not pertain to the safety of your child’s camp experience.

Here is my thinking.  A condition like diabetes, asthma, or even allergies may well require acute care while the camper is at camp.  A nurse or staff person may be responsible for administering medication for this acute condition.  Children with hepatitis B are rarely symptomatic and have compensated livers. They can take prescribed or OTC drugs you and your doctor have noted on the paperwork.  The likelihood of an emergency occurring due to the child’s HBV is nil, and in the event of an unrelated emergency, your child’s liver would tolerate emergency services necessary to stabilize him.  Life saving decisions would be left in the hands of an emergency care facility and ER trained staff.

There is always the concern that camp staff should be notified in order to protect them in case of accidental exposure, but I believe this is unnecessary.  We live in a small world and disclosing a child’s HBV status to camp staff may come back to haunt you.  HBV is vaccine preventable, and staff should be up-to-date on their immunizations.  Standard precautions training is a must for camp staff.  This will protect staff and all children from potential exposure to body fluids, such as blood, if protocols are properly followed. 

Because HBV and HCV are typically asymptomatic, and children are not screened prior to attending camp, you have to assume that someone else at camp will have HBV, HCV or even HIV. 

If you can’t get past concerns regarding your child and her HBV, then perhaps you need to re-consider camp for this summer.  We all have our own comfort level, and we get there in our own time.  However, my advice is to relax, fill out the forms, and send your happy camper off to camp!

Hepatitis B Prevention, Living with Hepatitis B

Hepatitis B and Your Neighborhood Pool

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Photo by Sheila http://ht.ly/6eRlt

Memorial Day marks the unofficial beginning of the summer, and with it, the opening of the community pool.  Every summer, questions regarding hepatitis B and the public pool are asked.  Typically it is those that are infected, or have children that are infected with HBV, that have concerns.  Hepatitis B is 100 times more infectious than HIV.  Does that mean you should be worried about contracting or spreading a blood borne pathogen like hepatitis B at the community pool?  Personally I don’t believe so, but there are a couple of things to consider.

If you’re concerned about a blood spill in the pool water than do not worry.  As long as you are frequenting a well-maintained pool that follows guidelines for consistently monitoring chlorine and pH levels in the pool, you’ll be fine.

Use common sense when at the pool.  Check that the water is clear, and the sides aren’t slimy. If the odor of your pool is too strong, something may be off.  Speak with management if you have concerns.  Pool staff are responsible for keeping water safe.  There are strict guidelines that must be followed.  Still have doubts?  Purchase your own pool test strips to confirm disinfecting quality of the pool.

Blood spills on the deck are a plausible transmission route for blood borne pathogens like HBV, but this hazard can be readily averted with proper cleanup.  Chlorine is a very effective agent against hepatitis B and other pathogens.  When made fresh and used in the correct concentrations, (nine parts water to one part chlorine) it kills pathogens like HBV.  As a team manager of a neighborhood swim team, I found the lifeguard slow to clean up a blood spill on deck.  The protocols are in place, but everyone needs to be vigilant to ensure they are followed.  If you have HBV and are bleeding on deck, don’t be afraid to insist that the blood spill be properly disinfected.  There’s no need to disclose your status.  These are standard precautions that should be followed for all blood and other body fluid spills.

The big culprit at the pool is swimmers with diarrhea.  Diarrhea causing germs may survive even in a well-maintained pool.    Chlorine resistant Cryptosporidium, also known as “Crypto”, is one such microbe.  One inadvertent gulp of contaminated pool water and it’s possible you, too, will contract diarrhea.  The good news is HBV is not spread via contaminated water, or the oral-fecal route.  Know the ABC’s of viral hepatitis!  Keep little ones out of the pool if they have diarrhea, make frequent swim-diaper changes, and don’t count on the plastic swim pants to keep everything in.  Oh, and don’t let the kids drink the pool water.  Parents, good luck with that one!

There are legitimate dangers lurking at the pool – a recent recall on pool drain covers jeopardize the safety of children, the risk of drowning and injury always exists, and of course there’s the risk of diarrhea causing illnesses.  Fortunately the odds of transmitting or contracting HBV are infinitesimal in a well maintained pool.  As always, remember that HBV has a safe and effective vaccine. Be sure those you know and love are vaccinated.

Beat the heat at your neighborhood pool this summer.  And finally, if your public pool looks like this… well, common sense would tell you there’s a lot more to worry about than hepatitis B!

 

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B A Hero Flash Mob Event!

Participants Perform a B A Hero Chant
What a pleasure and inspiration is was to participate in Hep B Free Philadelphia’s “B A Hero Flash Mob” event at City Hall, this week, in Philadelphia. It was great to experience the energy of the event through the many students and participants.

The group gathered at 11:30 to listen to brief messages from former Philadelphia Health commissioner Dr. Walter Tsou; current Philadelphia Health Commissioner Dr. Donald Schwarz; along with Professor Raymond Lum, Drexel University School of Public Health; Chari Cohen, MPH, Associate Director of Public Health of the Hepatitis B Foundation, and Dr. Timothy Block, Volunteer President, Hepatitis B Foundation, and Professor, Drexel University College of Medicine, who addressed the group.  This was a great forum to raise awareness of Hepatitis B, and urge the public to be screened and vaccinated.

As the clock-ticked down to the final minutes, the sun beamed and particpants waited in anticipation to reveal their “secret” to the world.

Richard Liu, MPH, rallied the crowd….

“Everyone has a secret.
Someone you know has Hepatitis B.
You can fight hepatitis B and liver cancer.
Reveal your secret.
B A Hero!”

The bull-horn blew at noon, and the crowd stripped off their jackets and cover-ups, revealing their blue T-shirts emblazoned with a superman-like emblem with a big, red “B” in the shield, all the while chanting:

 “B A Hero!  Get Screened!  Get Vaccinated!”

B A Hero!

The crowd was charged with energy.  The chanting continued.  Some ran about with their B A Hero T-shirts, and red capes. 

One group of elderly adults quietly displayed their support, wearing their T-shirts.  Guest speakers were interviewed.  One group of students performed an educational, “Hep B Rap”.   

The message was clear.  Hepatitis B is a serious problem, and the public needs to be screened for hepatitis B.  There are effective drugs for those identified, and may be in need of treatment.  There is a safe and effective vaccine.  We need to ensure vaccination against hepatitis B for young and old, and especially those in high risk groups.

It was great to have media coverage at the event.  We were thankful to have KYW News Radio, CBS, Fox and ABC in attendance to help spread the word to a broader, listening group.  This was a wonderful event for Hep B Free Philly, the Hepatitis B Foundation, Hepatitis Awareness Month and the community.

Now it’s time to do your part.  Be an educator, and help raise hepatitis B awareness.  Be sure everyone you know has been screened and vaccinated for HBV. 

B A Hero today!

Hepatitis B Advocacy, Hepatitis B Treatment

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.

Hepatitis B Advocacy

Call to Action! Urge Your Members of Congress to Attend Viral Hepatitis Congressional Briefing!

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On Thursday, May 12th, Congressman Mike Honda and Senator John Kerry will hold a Congressional briefing entitled “Combating the Hidden Epidemic: U.S. Department of Health and Human Services Action Plan for the Prevention and Treatment of Viral Hepatitis.” This briefing will inform Members of Congress and their staff about the long-awaited report from HHS that will detail the federal government’s strategy for combating hepatitis B and C in the United States.

The release of this report and the briefing offer a tremendous opportunity to change the course of the viral hepatitis epidemic in the U.S. and demonstrate Congressional leadership in moving forward a comprehensive prevention and treatment strategy.

We need as many Members of Congress and their staff to attend this briefing to show their commitment to implement and fund the HHS plan. You can help make this happen by making three important phone calls right now!

How you can make a difference:

Call the Capitol Switchboard toll-free at 1-888-876-6242 and ask to be connected to your U.S. Representative. When you are connected, ask for the staff person who handles health care issues. Whether you speak directly to the staff person or leave a message, tell him/her:

“My name is _____________ and I live in (city/state). I am calling to urge Representative _____________ to attend a Congressional briefing on fighting the viral hepatitis epidemic in the United States. This important briefing will outline the new HHS “Action Plan for the Prevention and Treatment of Viral Hepatitis.” The briefing will be held on Thursday, May 12th, from 9:30 – 11:00 am in 210 Cannon House Office Building. Please contact Meina Banh in Congressman Mike Honda’s office for more information and to register. In the next 10 years, about 150,000 people in the United States are projected to die from liver cancer and liver disease associated with chronic hepatitis B and C. I strongly urge your office to participate in this briefing and show your commitment to fighting these preventable diseases.”

Next, call both of your two U.S. Senators (using the Capitol Switchboard number) and deliver the same message to their health care staff.

You can also ask the staff person for his/her email address and forward the attached “Dear Colleague” letter with more information about the briefing.

Thank you for taking the time to make a difference!

This Action Alert was created by the Hepatitis Appropriations Partnership, the National Task Force on Hepatitis B: Focus on AAPIs, and the National Viral Hepatitis Roundtable.

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Join The Hepatitis B Foundation for Our 20th Anniversary Crystal Ball!

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The Hepatitis B Foundation is celebrating 20 years as the global authority dedicated to eradicating Hepatitis B. 

Please join us for an evening of fine dining and entertainment!

Date: Friday May 13th, 2011
Time:  Cocktails 7:00 pm
Dinner:  8:00 pm
Place:  PineCrest Country Club in Landsdale, PA
Dress:  Business or Cocktail Attire
Tickets:  $175 per person or $300 per couple

This is the Hepatitis B Foundation’s signature fund raising event, so we hope you will join us in an elegant evening of celebration, fine dining, and dancing to the sounds of Courtney Colletti Music!

Both a silent and live auction will add to the festivities.

If you are unable to attend the evening, but would like an opportunity to participate in a raffle to benefit the Hepatitis B Foundation, and WIN a six days/nights vacation to exotic Costa Rica, you may purchase a ticket.  The winning ticket will be drawn May 13th, but the winner need NOT be present to claim the prize!  Click here for more information!

For additional details and tickets, please call Ms. Peggy Farley at
215-589-6328 or email Peggy.Farley@hepb.org

We hope to see you there!

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention

Why Vaccinate Infants Against Hepatitis B?

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Sadly, out of all age groups, it is infants and very young children that are at the greatest risk for acquiring a chronic, life-long infection with hepatitis B.  In fact 90% of babies exposed to HBV will become chronically infected, and will live with the virus for the rest of their lives.  This includes mother-to-child transmission, and horizontal transmission from close contacts.  This is why the first dose of the hepatitis B vaccine is recommended before leaving the hospital.  The vaccine is safe and effective.  Choosing to vaccinate is an option those of us with HBV infected children would have LOVED to have.

Hepatitis B is a silent disease.  Forty percent of people living with HBV have no idea how they became infected.  Others have not yet been diagnosed.   Many likely acquired it at birth, or early exposure, and have had the virus smoldering for decades.  They may find out about it in routine blood tests, or from the Red Cross following a blood donation.  Hepatitis B is non-discriminating, although it is more prevalent in certain high risk groups.   Sometimes being part of a high risk group is as simple as having a parent born in a country where HBV is endemic.  Hepatitis B is 100 times more infectious than HIV, and yet many people say they would get vaccinated against HIV if a vaccine existed.  Why not hepatitis B?

So why have your infant vaccinated at birth?  It just makes sense.  How can you be assured all house-hold contacts are not infected?  War heroes get infected, as do health care workers, and other loving family members – mommies, daddies, grandparents, aunts, uncles, and cousins.  Parents go to work, and little ones go to day care.  They play at the neighbor’s house or with friends at pre-school.  Blood spills occur and sometimes they’re not properly managed, or even noticed.   Boo-boo’s come uncovered and little friends touch.  Sometimes “love-bites” are exchanged much to the dismay of parents.  Even the most vigilant parent is going to miss something.   HBV is not transmitted casually, but the possibility of exposure cannot be denied – especially at such a young age.

Hepatitis B is a poster-child for infant vaccination.  It is a tenacious virus, and there is no true cure.  If you are a pregnant woman, be sure you are tested for hepatitis B during your pregnancy.  If you are HBV positive, break the cycle .  One in five at-risk babies in the U.S. may NOT be receiving the necessary treatment, so SPEAK UP and ensure your baby receives prophylaxis treatment at birth.  Complete the vaccine series and have your baby tested for HBV at his one-year checkup to ensure he is protected.

If you are not HBV positive give yourself piece-of-mind.  When your baby is born, be sure to have her vaccinated before you leave the hospital, and give her a lifetime of protection against hepatitis B.

Baruch S. Blumberg Institute