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A Personal Reflection on China for World Hepatitis Day – Part I

Sadly, like many Americans, until I came face-to-face with hepatitis B, I had no idea of the global implications.  Over the years, raising HBV awareness has been a quiet mission.  In 2002 and 2003 I was fortunate to travel to China, and help present train-the-trainer programs that were to be used in Chinese orphanages, presented to Chinese foster families, and used as training sessions for rural doctors.  The training programs were successful, and well received, but of course they were only a small contribution in a country where HBV infection is endemic.  In fact one in ten Chinese are chronically infected with hepatitis B.  Nearly one half-million die per year from HBV related liver cancer, or one Chinese person every 60 seconds.  As an American, I was aware of the discrimination faced by those living with HBV in the U. S., but I had no idea how widespread discrimination was throughout China.  For some naïve reason, I thought HBV infection would be better accepted in a country where so many are living with HBV.  I was very wrong.

Training participants listened with earnest as we reviewed infection control techniques and modes of transmission.  All were interested in the details.  Perhaps what was more sobering were the interactions in between and following these training sessions.   I found myself quietly met by a number of tentative women with downcast eyes.  They waited in the bathrooms, and stepped out of tiny alley-ways as we walked back to our hotel. They quickly surveyed the area, their eyes darting back and forth, before they asked their questions about HBV treatment, and outcomes.  The despair was was palpable.

We were invited to visit a local city orphanage.  The rooms were somewhat sterile, but cheerful and the care takers were very good with the children.  However, when we met with the staff, we learned of their concern of HBV infection among the children under their care.  They were concerned about transmission. However, they continued to treat infant illnesses with injections and IV drugs, rather than an alternate, oral medication. An orphanage is often a world unto it’s own, yet children with HBV are often segregated from the other children.   Children diagnosed with HBV outside of the orphanage environment may also be refused entry into school, although this practice may vary with the province, the city, or even the official in charge.  That doesn’t leave a child identified with HBV much of a future.

Perhaps one of the most sobering experiences was meeting with HBV-listserve members at a local tea house.  We were seated upstairs, away from other guests, which is not uncommon when foreigners are present, but it was clear this was more for their privacy.  They scanned the room and were careful not to speak when the server entered the room.  This was the first time they had met in person, and it was clear their hearts were heavy with the burden of living with HBV.  Throughout the evening, no names were used, and all members referred to one another by their screen names.  Most felt very isolated with their illness and were desperate for information.  Many were shunned by family and friends, were humiliated and forced to eat separately, or carry their own bowl and chopsticks. They lived alone with the knowledge of their infection, as widespread discrimination loses jobs and ruins families. There were a number of treatment questions.  Many were interested to know how long they needed to take the antiviral drugs, and whether or not they could stop for a while – if they were feeling better.  We told them that stopping and  re-starting treatment was not good, and they should speak with their doctor.  We didn’t realize that few were under the care of a doctor for their HBV.

Later, while traveling in Shanghai, we visited a lavish pharmacy.  All oral, prescription medications were available in China without being prescribed by a doctor.  Only injectable drugs required a physician’s prescription.  As a result, it was likely my listserve friends were self-medicating without the advice of a liver specialist.  The drugs were likely cost prohibitive, so the need to start and stop antiviral treatment was more a function of expense.  It was apparent that most were not being treated and monitored by a specialist.  The prospect was sad, all the way around.

Please join us as Thursday’s blog concludes “A Personal Reflection on China for World Hepatitis Day….

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.

 

Raw Shellfish Warning for those with Hepatitis B

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.

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!

Fun, Fireworks, and Alcohol Consumption Over the 4th of July Holiday

Are you gearing up for the 4th of July, holiday?  Planning on a couple of days of fun, sun, fireworks, and holiday picnics and parties?  If you’re living with hepatitis B, you will want to be sure to abstain, or at a minimum, keep your alcohol consumption extremely restricted.  Some of the statistics out there linking alcohol consumption to liver disease are sobering (no pun intended), even for those that do not suffer from liver disease due to viral hepatitis.  If you have HBV, drinking just doesn’t mix with love N’ your liver.

So just how much alcohol is too much?  Like everything else, alcohol tolerances vary with the individual, so the amount will vary.  Some people, with or without HBV, may be more prone to liver disease due to contributing factors such as fatty liver disease, hemochromatosis, autoimmune hepatitis,  or hepatoxicity – exposure to certain drugs or environmental and chemical toxins causing liver scarring .   Remember that the liver is basically a very quiet, essential, non-complaining organ.

If you have HBV, you know your tolerance for alcohol is going to be nil.  Drinking will contribute to liver disease.

For healthy women who do not have hep B, 20 grams of alcohol, per day and for men without HBV,  60 grams of alcohol per day is risky business and may very well contribute to liver disease.  This equates to 60 ml. of sixty-proof liquor, or 200 ml. of wine (12% alcohol), and 500 ml of beer (5% alcohol).  A visual always works best for me:

Ouch… Even if you do not have HBV, you are risking your liver health when you drink casually, on a daily basis.  For women, this basically equates to one mixed drink, glass of wine or beer per day, while the limit for men may be three alcoholic drinks per day.

If you’ve got HBV, perhaps it’s time to eliminate alcohol from the party scene and replace it with a thirst-quenching, non-alcoholic beverage.  If not, you might consider one drink for the holiday weekend, and abstain for very l-o-n-g periods of time without alcohol.  Consider one glass of wine, occasionally, the new “binge drinking” level if you wish to best maintain your liver health.  Let’s face it:  abstinence is best if you’re really looking to limit the damage done to your liver.  There are so many toxins that our liver silently removes on a daily basis.  This is one toxin we can choose to control, and eliminate from our environment.

So, light up the sky with fireworks.  Eat your favorite, healthy foods this weekend, and make a commitment, starting this weekend, to remove alcohol from your life, and love your liver.

 

Just Diagnosed with Hepatitis B? How to Get Through the Next Six Months to Find Out If It’s Acute or Chronic

Image courtesy of graur razvan ionut at FreeDigitalPhotos.net.
Image courtesy of graur razvan ionut at FreeDigitalPhotos.net.

Have you recently been told you have hepatitis B?  Dealing with the illness and waiting out the next six months to determine if your case will resolve itself or become chronic can be nerve-wracking.

Fortunately, 90 percent of adults who are infected will clear or resolve an acute hepatitis B infection.  Acute patients do not typically require hospitalization, or even medication, during this time.  If you are symptomatic, (some symptoms include jaundice, dark urine, abdominal pain, fever, general malaise)  you may be anxiously conferring with your doctor, but if you are asymptomatic, you might not feel compelled to take the diagnosis seriously.  The response to both is to maintain a balance.  Do not ignore a hepatitis B diagnosis, but don’t let it consume you.

Your doctor will be monitoring your blood work over the next few months to ensure you clear the virus.  Your job is to start loving your liver …today.  STOP drinking alcoholic beverages.  Refrain from smoking.  Your liver is a non-complaining organ, but you cannot live without it.  Make everything in your diet liver-friendly and healthy.

Avoid processed foods, fatty foods and junk.  Get advice before taking prescription medications, herbal remedies, or over-the-counter drugs – especially pain relievers like ibuprofen, acetaminophen and paracetamol.  They can be dangerous to a liver that is battling hepatitis B.  Get plenty of rest, and exercise gently, if you are able.

Don’t forget that you are infectious during this time, and that loved ones, sexual partners and household contacts should be vaccinated for hepatitis B.  Be sure you and all contacts follow standard precautions.  If anyone fears exposure, encourage screening to ensure they did not contract hepatitis B as a result of your infection.  The hepatitis B vaccine is not effective if you are already infected with the virus.

On the flip-side… Do not let this new hepatitis B diagnosis consume you.  As the weeks and months pass, you might find that your illness is not resolving, and you might worry that you are one of the unfortunate 10 percent whose infection becomes chronic.  The associated stress and anxiety can be challenging, even overwhelming.  It can contribute to physical symptoms you may be experiencing.  Join an on-line support group, find a confidant or professional with whom you can share your fears.

When your lab results are back, and you’re told you have cleared your hepatitis B infection, be sure to get copies of your lab reports to ensure there are no mistakes.  If something looks wrong, or if you’re confused, speak up and ask your doctor.  It is imperative that you know if your acute case has progressed to a chronic infection.

No one wants chronic hepatitis B, but it is manageable with monitoring and there are effective treatments.  If you are confused about your diagnosis or test results, feel free to contact the Hepatitis B Foundation at info@hepb.org.

There are lessons to be learned from this experience.  If you have resolved your acute hepatitis B infection, then you do not need to be vaccinated.  However, please be sure that you help us eradicate this virus by spreading the word and ensuring everyone you know has been screened and vaccinated for Hepatitis B.  And don’t forget to keep Love N’ Your Liver…

Sending Your Child to Camp with HBV

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 and Your Neighborhood Pool

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!

 

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 FoundationHepatitis 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!

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.