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

Participating in HBV Clinical Trials

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Have you considered participating in hepatitis B clinical trial?   A clinical trial can be a great opportunity to take advantage of the latest advancements in HBV treatment and monitoring, typically without expense to the patient.  It can open doors and provide an opportunity to interact with liver specialists on the leading edge of treating HBV.  There are numerous clinical trials for hepatitis B offered all around the world, from adult to pediatric patient populations.

There are three testing phases that drugs go through before they are approved for use for by the FDA.  A fourth phase examines long-term use.  This is a rigorous process, costs hundreds of millions of dollars and takes 12-15 years before a drug is finally approved. Check out the animated Drug Discovery Time Line to get a better appreciation for the process.

A major advantage of participating in a clinical trial is that expensive treating medications, clinical monitoring, and lab work are typically provided without expense to the patient, and the patient is monitored throughout the process by experienced, participating liver specialists.

The next thing to consider is whether or not you are eligible for a particular trial.  There are various inclusion/exclusion criterion.  Some trials or studies are looking for patients that are treatment naïve, (patients who have not taken medications for HBV) while others are looking for patients that are treatment experienced, (patients who have taken particular medications for HBV) but may have failed on one treatment protocol, and might need “rescue therapy,” such as an antiviral to replace a previous antiviral where a resistance to the drug has occurred based on a viral mutation.  It varies with trial.

Other studies may be looking for candidates based on HBe status (positive or negative), degree of liver damage, or ALT or HBV DNA levels over a particular time period. You must first qualify before you consider participation in a trial or study, so be sure to check the qualifying criterion, and discuss with your doctor.

Naturally, each candidate will need to weigh the risks versus the benefits of receiving an experimental drug. Discuss the pros and cons with your doctor. Do you really need treatment for your HBV at this time? What are the possible short and long term side effects? Do you think you can manage them? You know your body best. What about the logistics?  Is there a need for frequent lab work?  Does it need to be done on site, or can blood be drawn at a local lab?  What happens when the trial is complete?  This is especially important when considering antivirals. Will you need to remain on the medication when the trial is complete?  Will you be financially responsible, and if so can you afford it?  Will participating in a trial exclude you from future trials?  What about resistance and cross resistance to future drugs? These are a few of the questions for which you need to think long and hard, and of course discuss them with your liver doctor and the participating specialist.

It also doesn’t hurt to ask other patients on HBV internet support groups.  You might well find someone with personal experience with the drug, keeping in mind that everyone responds somewhat uniquely to the same drug therapy. I have found these forums extremely helpful when considering a new drug.

The Hepatitis B Foundation is committed to maintaining monthly, updated clinical trial data available to friends living with HBV on our website.  We do much of the up-front work for you by sorting through the hundreds of trials available via clinicalTrials.gov, a registry of clinical trials.  We divide the data into unique treating situations that might benefit various patients, such as clinical trials for patients that live in the U.S. or internationally,  pediatrics, coinfected, candidates for liver transplantation, patients struggling with HBV related hepatocellular carcinoma, and HBV reactivation and lymphoma.  Most trials relate to the treatment of HBV, while some are observational studies, long term studies where patients are monitored over time.  Some relate back to treatment studies – durability of treatment or long term effects, while others study patients with HBV, and identifying factors that may cause the disease to activate or worsen, and are monitored via annual or bi-annual blood work and annual visits.  It varies with the trial.

So if you have HBV, consider your status. If you are a candidate for treatment, consider existing, approved treatments vs. participation in an HBV clinical trial. It’s up to you and your doctor to determine if a clinical trial is a good fit.

 

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

Cleaning Up and Staying Safe at College

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Whether you have hepatitis B or not, you will want to follow some simple clean-up rules now that you are living in a more public environment and away from home. (Take a look at the previous blog – Off to College with HBV.) Regardless of your living arrangements – dorm room, quad, or apartment, you will want to set a couple of ground rules, and be prepared for maintenance, and possible emergency spot cleaning.

Bathrooms are a breeding ground for a plethora of bacteria and viruses. They are the site of all kinds of planned and unplanned, natural and unnatural biological and human functions that produce blood, bodily fluids, and all kinds of other body by-products.  They are shared spaces where very private things occur. They are shared spaces where there’s a whole other microbial world living off of all the human activities that occur in the bathroom. That is why bathrooms should be cleaned properly and regularly.  It’s good practice and keeps everyone healthy.

Standard or universal precautions are  prevention methods that should be integrated into everyone’s life.  The whole goal is to prevent contact with an infectious agent such as HIV, HCV and HBV, assuming all possible blood or bodily fluids may be contaminated. They remind you to provide a barrier between you and any potentially contaminated blood or body fluid, whether it is in an emergency situation with a bleeding person, or the cleanup of blood or bodily fluids. It’s yet another reminder to “wash your hands”, and basically use common sense.  In the case of HBV or other infectious diseases (HCV, HIV), blood in particular may contain high concentrations of virus which could be transmitted to others through mucous membranes, orifices, or microscopic cuts in the skin.  HBV is a tenacious virus and can live outside the body for seven days. Fortunately, HBV is vaccine preventable.

If you live in a dorm, with shared, floor bathrooms, they should be cleaned and maintained by the janitorial staff. However, it’s good to be prepared for an emergency spill in your room, or the bathroom at odd hours. If you live in a quad or apartment with others, you’ll want to be sure to set up a chore chart so that common areas like bathrooms and kitchens are properly cleaned, and that trash is regularly disposed.  If you don’t set the ground rules from the start there are bound to be hard feelings among your roommates.

Weekly bathroom maintenance should include the disinfection of surfaces on toilets, sinks and showers.  The general rule is clean first and then disinfect.  This does take some time since the bathroom cleaner is first sprayed and allowed to sit for at least 30 seconds (times will vary with the disinfectant or depending on your source), and then cleaned with towels, (to be disposed, or laundered separately in hot water with detergent and a little bleach) and then disinfected with the same cleaner and allowed to sit for at least five minutes, and then finally wiped down again with clean towels.  Don’t know how many housekeepers follow this rule of thumb, but use common sense and think about how you use your towels as you clean from surface to surface.  In between cleanings, use disposable bleach wipes to wipe the toilet and sink, and don’t be stingy with them.

Keep the container of bleach wipes in plain sight so visitors have the option to wipe the toilet, sink, or clean up after an accident – hopefully not with the same wipe. (You may find it interesting to note that the sink is often the greatest source of bacteria…a moist environment with plenty of microbial snacks including skin flakes and other organic fodder) Don’t forget to put out a container of liquid soap to encourage hand washing, and if you are a female at college, be sure that all used feminine hygiene products are carefully disposed of in plastic bags.

When it comes to cleaning up a blood or body fluid spill, it is essential to follow the rules.  All blood should be considered contaminated with an infectious agent such as HCV, HIV or HBV.  If you are assisting your friend or roommate in the case of an emergency, be sure you have a barrier between you and your bleeding friend – of course this is after you have called 911 if this is a true emergency..  Disposable gloves are perfect, but in a pinch, put plastic bags on your hands, or use a clean sanitary pad, or bunch of towels (paper or cloth) to staunch the flow of blood.  When you are finished with the emergency, dispose of contaminated articles and thoroughly wash your hands with soap and warm water before progressing to the cleanup.  Hopefully your roommate will be able to clean up his own spill, but it’s possible he’ll need some help.

Bleach is a wonderful disinfectant, and effectively kills HBV, and other pathogens.  Don your disposable gloves, and  prepare a fresh bleach solution for the cleanup that is one part bleach to nine parts cool water.  Use a fresh solution as the potency of the solution quickly diminishes, and do not use hot water.  Remember the proper order – clean, then disinfect.  When cleaning a surface that is known to contain a potential contaminant (blood or bodily fluid), spray it with the bleach solution and let it sit for a few minutes.   While wearing gloves, cleanup the spill with disposable rags or paper towels.  Dispose of the contaminated towels, and gloves.  Don a new pair of gloves and once again spray the area.  Let is sit and disinfect for at least 10 minutes and wipe again with clean towels.  Dispose of contaminated towels and gloves in a seal-able plastic bag.

If you are in a dorm shared-bathroom, it’s possible to walk into a mess you choose not to clean up, but be sure to alert floor mates of the contaminated area with a sign so others are not accidentally exposed to the potential contaminant, and to alert the janitorial staff of the spill.   It’s a courtesy, but it also keeps everyone safe.

There are also EPA registered disinfectants that are premixed and kill infectious diseases, but be sure that HBV is specifically listed as it is a more difficult virus to kill.  The times to soak and disinfect vary with each product, and the times I found for basic disinfection varied in my research, so when you’re making the effort, be sure to take the extra time to ensure you have killed all possible contaminants.  These pre-mixed disinfectants are more convenient, but they are also more expensive, and you need to check the dates to ensure they remain effective and have not expired.

Here are list of supplies to have on hand for your room or apartment that specifically relate to blood and body fluid cleanups:

  • 1 small bottle of bleach
  • 1 squirt bottle (pre-marked with a sharpie to denote bleach and water quantities.. 1 part bleach to 9 parts cool water)
  • Box of disposable gloves
  • plastic bags – trash and sandwich bags
  • disposable towels or paper towels

You’ll need a list of other supplies if you want to keep that bathroom relatively germ free.  Don’t forget the soap and the bleach wipes!

 

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

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 contaminated bodily fluids – especially blood, semen and vaginal fluids.  Store your razor inside your bag, and be sure you do NOT leave it in the shower stall.  Razors are an effective transmission vehicle for infectious disease like HBV or even HCV and HIV.  If you leave your razor in the shower, you cannot assume that someone else has not used it.  Throw it away and start fresh.

This goes for nail accessories like clippers, cuticle cutters or even files.  Keep them in your bag and keep them out of sight from roommates and other visitors.  Few people think twice about picking up a pair of nail clippers or a nail file.

Communal soap can be liquid or bar soap.  Don’t share any body jewelry including pierced earrings.

Don’t forget about your toothbrush.  I can still remember a friend mentioning that he had borrowed my toothbrush, after visiting.  Unfortunately he mentioned it after I had already brushed my teeth.  Disgusting!  Do you really want anyone using your toothbrush??  After the fact, it’s too late to do anything about it.  You need to be proactive to make sure these little mishaps don’t occur.  Put your personal items away and out of sight.

Then there are the visitors…  Most likely you won’t have control of everyone in and out of your room or apartment.  My college roommate and her boyfriend loved that I was organized and prepared for all scenarios.  They were constantly “borrowing” my things.  I wish I had the courage to tell my roommate’s boyfriend that I would prefer he wash my pillowcase after he borrowed my pillow, along with all of the other things he helped himself to without asking.  Keep your personal items separate, and let your roommate know that your boundaries are to be respected. Establish these boundaries up front!

Perhaps you’re worried about what others might think of your toiletries bag, or that you like your personal things respected.  Don’t tell them you’ve got HBV.  Just laugh and tell them you’re a “germaphobe”. By keeping personal items out of view and sequestered in your own bag, everyone is protected.

Be sure to read the follow-on blog: Cleaning up and Staying Safe at College. 

Living with Hepatitis B

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

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(If you missed it, see part I) The second trip entailed the training of rural doctors.  During the training course, we used a number of simple visuals to better get some basic ideas across.  We wanted to drive home how common HBV was in China, and the number of Chinese people infected. We asked 10 people to stand up.  They smiled with pride, having been selected, until they realized they were being identified as one of those possibly infected with HBV.  The numbers dwindled as we went through the process of asking some to sit down representing those that had been infected, but resolved the virus, until finally, the last one standing represented someone with chronic HBV. This person was clearly horrified. This visual certainly drove the point home, but perhaps we were the ones educated by this process.

The Chinese people love children. I had a photo album of my children, which many enjoyed during the break.  There was one photo with a picture of both my two children and my colleague’s two children. My colleague and I were traveling with two of the children and had not identified if either were infected.  (As a result, we sat at every meal where most assuredly there was a large serving spoon in every dish…)  There was only one child that could be “safely” identified. When I pointed the child out to them, I could hear them, speaking in English, saying “Yes, I knew it.  Look at her.  She’s sick… doesn’t look well.”  I can’t even imagine what was said in Chinese.  HBV is nearly always asymptomatic in children.  All four children in the photo appeared equally healthy.  At that moment, I was grateful these children were spared the taunts.

During the course of the visit, we made an impromptu stop at a hospital on the outskirts of one of the cities.  We were shocked when we were permitted to enter the compound without pre-approval.  It was not a sanitized visit like all of the other stops we made.  We were traveling with a U.S. doctor, and I think the Chinese doctor we met was interested in speaking with her.  The facility was well below the standards we had encountered elsewhere. The largest building on the compound was the “women’s facility”.  We were not allowed in the building, nor were any pictures permitted of that particular building.

In another city we met with a conventionally trained doctor who had grown up in a very rural province, and was sometimes requested due to her rural background and familiarity.  She told us of a recent rural visit, where hundreds of women had been infected with an STD.  As a result of migration of workers into the cities, these women villagers are more often victims of diseases previously not seen in these areas.  Sadly, many of the women were being infected due to the lack of precautions taken during the annual examination of women.  The major culprit was the reuse of speculums that were not disinfected.

Finally, we met so many interesting, young Chinese, and heard so many wonderful stories like the one about a young university graduate who started the first online community of hbvers (that’s what they like to call themselves.)  It would turn out to be the biggest in the world, and would provide much needed support for many isolated Chinese, living with HBV.  There were also other stories, too, of how Chinese hbvers fought against discrimination by using a stand-in – either a paid “professional”, or other, loyal friends for their compulsory medical blood tests.  Imagine living with the fear of losing everything just because of the results of a simple blood test.

I went to China, naively thinking I would make a difference.  I was overwhelmed with the dire situation of those living with HBV.  The experiences and stories were sobering and haunted me for months after returning.  It was so personal. I certainly cannot  fix this global problem on my own, but I will do everything possible, so that others may understand, just a little, the impact of living with hepatitis B in China.

Living with Hepatitis B

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….

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

Got Hepatitis B? Share Your Favorite Liver Specialist with the HBV Community

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Do you have a favorite liver specialist that you’d like to share with the Hepatitis B Foundation and friends living with HBV?  Friends with HBV live all over the globe, and we are interested in liver specialists with Hepatitis B treating experience from all over.  Pediatric patients are a special sub-population with special treating needs, too.  We’d love to hear from all of you!  Here’s what we’re looking for…

The Hepatitis B Foundation maintains a database of liver specialists that have experience treating patients with HBV.  Based on your recommendations, we would love to extend an invitation to your liver specialist to participate in our directory of liver specialists.  If your liver specialist replies, we will add his/her name to the list.

We’ve had some wonderful, new HBV friends on facebook from Africa and other continents, and we would encourage all of you to send us your liver specialist’s contact information.  Our international database is a little sparse, so we really need your input!  This would also include parents of children with HBV that are living abroad.  So, if you’ve got experience with a treating specialist that you’d like to share, you can be sure others will benefit from your advice.

Here is what the Hepatitis B Foundation needs to know:

  • Residing country
  • Adult or pediatric specialist
  • Liver specialist’s name and contact information  – including name, address, telephone number and email address (if available)
  • Anything else you’d like to share!

Email this important information to directory@hepb.org .  Please keep in mind that the information you provide is offered as a courtesy to others in the HBV community.  Your name will not be associated, and the addition of your physician does not make you responsible in any way.  This is not a physician referral service, but rather an opportunity for those living with HBV to share resources.  (Please note the disclaimer.)

Thanks to all who participate.  The entire HBV community benefits from your input!

 

Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B

Mosquito Repellent and Hepatitis B

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Summer has arrived and so have your annoying neighborhood mosquitoes, who show up uninvited to every party.  Everyone’s first impulse is to spray on the DEET, an effective, insect repellent, to keep them away.

If you have hepatitis B, and are working hard to “love your liver”, you might be wondering what affect DEET will have on your liver.   Your liver is an amazing organ responsible for filtering just about everything we inhale, ingest or absorb through the skin.  DEET is an effective, but strong chemical, that when applied to the skin, or accidentally inhaled while spraying, or ingested due to poor hand washing, may be found in the blood stream up to 12 hours later.  It’s your liver’s job to ensure this toxin is filtered from your system.   An over-taxed liver can be problematic for anyone, but placing additional burdens on your liver when you have HBV can contribute to liver damage over time.

Here are a couple of things to consider.  Mosquitoes and other flying, or biting insects are vectors for numerous diseases that can make us very sick.   (Please keep in mind that mosquitoes are NOT vectors for hepatitis B.)  As a result we have to consider other options, or weigh the risks vs. the benefits of spraying on a dose of DEET.  If you do decide that DEET is the best protection against mosquitoes, consider limiting your exposure by applying it to your clothing, rather than directly to the skin.  When you’re back inside and out of mosquito territory, wash it off.  Don’t wear it to bed.

A natural alternative to chemically produced repellents is citronella, which has been registered for use in the U.S. since 1948.  It is made by steam distillation of certain grasses, and is considered a biopesticide, a naturally occurring substance that controls by non-toxic means.

Citronella can be purchased in various outdoor candles and natural, registered products such as Burt’s Bee’s Herbal Insect Repellent, or Avon Skin So Soft.  Citronella and other remedies can be purchased as essential oils and applied to the skin.  Please remember that natural does not equate to safe.  Make sure directions-for-use are legitimate and followed explicitly.  These oils are dangerous when ingested, and they are not packaged in child-resistant containers to avoid accidental swallowing.  Be sure to research all natural remedies or chemical products, and ensure the directions-for-use are legitimate, and that they are stored out of reach of children.  In researching this blog, I ran across various factoids and instructions-for-use with natural remedies that were contradicted in other articles.

Here are some additional tips that may require a little more forethought, and may not be as effective as a chemical repellent.  However, they can provide some relief and perhaps a balance.  Recommendations include:

  • Wear light colored clothing.  Mosquitoes are attracted to dark clothing.
  • Cover as much skin as possible with clothing… long sleeves, pants, socks, hats, etc.
  • Consider the fragrances you wear.  Floral or fruity fragrances, scented soaps, perfumes, hair products, scented sunscreen and even fragrance from fabric softeners and dryer sheets attract mosquitoes.  In my house, nothing smells clean and fresh.  Everything is unscented.
  • Avoid being out when mosquitoes are most active – dawn and dusk.
  • Use external fans.  Mosquitoes don’t fly well in a stiff breeze!
  • Avoid areas with standing water.
  • Eat garlic…lots of it.  My pharmacist is Indian, and also prescribes natural remedies.  She told me garlic is often consumed in massive quantities to discourage mosquitoes.
  • Bats are your friends…   I grew up with two medium-sized, but stagnant ponds on our property.  We had lots of bats and no mosquitoes.

As always, it’s all about common sense and balance.  If you’re having a picnic at the Dismal Swamp, or traveling to countries where the risk of disease carrying mosquitoes is very high, then you might want to think about bringing along the can of DEET, and using it responsibly.  Perhaps an outing here or there may also warrant the use.  Otherwise, make an attempt to combat mosquitoes naturally, or make a concerted effort to avoid them at their worst.  Yet another way to incorporate “loving your liver” into your daily life!

 

 

 

 

 

 

Baruch S. Blumberg Institute