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Navigating Our Emotions When We’re First Diagnosed with Hepatitis B

Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net.
Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net.

When we’re first diagnosed with hepatitis B, our physical health isn’t the only thing we need to focus on. Many of us experience powerful surges of fear, anger, sadness, powerlessness, depression, and anxiety.

No matter what you’re feeling, you have a right to feel whatever emotions are welling up – sometimes unexpectedly – inside you. There are no right or wrong feelings, they just are, and it’s up to you to decide what choices you make and how to respond to them.

When my daughter was first diagnosed, she was a toddler and happened to be coming down with a cold. I knew nothing about hepatitis B and was convinced she would soon die from it given her crankiness, lethargy, and nonstop sleeping.

Within a day or two, she was her smiling, energetic self again, and I happily slipped into denial. Surely the test was wrong or there was a mix-up in the result. My husband dragged his feet for weeks before he agreed to be screened for hepatitis B so great was his denial and fear.

Denial is a normal first reaction, it can give us some  breathing room to get used to the idea that we’re infected. But denial can also be dangerous, especially if we’re in a sexual relationship with someone and don’t take precautions. Denial can be dangerous when we hide our infection and don’t tell our family members or partners, even though they may have been exposed. Denial is dangerous when we don’t tell our parents, who may not know they’re infected and unknowingly passed the virus to us at birth.

It’s important to talk out our feelings with a doctor, a therapist, or a friend you trust. We need to move through denial so we can begin to receive the care and support we need, and talk to others who may also be at risk.

Anger is another common and natural feeling after a diagnosis. It’s OK to get upset about how we or our family members were infected, or get angry that our parents or lovers didn’t know they had the virus and infected us. Try to talk about your anger with counselors or friends, get some exercise to work off your tension and avoid situations—including drugs or alcohol—that can ignite festering emotions.

It’s normal to feel sad, and sometimes the sadness doesn’t go away quickly. If you feel prolonged sadness, anxiety, or fear, or find you’re gaining or losing weight or sleeping more or less than usual, it’s time to talk to someone who can help.

Fear and anxiety are common because we don’t know what’s going to happen next. If you’ve just been diagnosed, you may have to wait six months for another test to show whether you were recently infected and have acute (short-term) or were infected as a child and have chronic (long-term) hepatitis B. That wait can be insufferable.

Our stress can cause a host of physical symptoms, ranging from headaches to fatigue, that may have nothing to do with hepatitis B. It’s important to talk to your doctor about these symptoms so you know what is hepatitis B-related, and what’s caused by worry and fears.

At this early stage, many of us want to get rid of the virus as soon as possible and we’re willing to try any supplement or treatment available, even if our doctors tell us we’re healthy and don’t need any treatment. At this early diagnosis point, we just need to take care of ourselves, eat healthy foods, avoid alcohol and cigarettes, and get monitored regularly, even though what we really want is a magic pill that will make this infection go away.

In normal grief cycles, there is a point of acceptance. But I’m not sure we totally ever accept this loss of our “perfect” health, and our ability to have sexual relations, give birth, or drink a glass of wine without thinking of the shadow hepatitis B casts over these activities.

As a wise friend has pointed out, we need to accept that hepatitis B is part of us, but it doesn’t have to define us. Perhaps getting to that realization is the journey we begin when we read that first lab report and hear the diagnosis.

For support and information from other people living with hepatitis B, join the Hepatitis B Information and Support Email List at  http://hblist.net

 

It’s Flu Season: Protect Your Liver from Unintentional Acetaminophen (Tylenol) Overdose

Image courtesy of marin at FreeDigitalPhotos.net
Image courtesy of marin at FreeDigitalPhotos.net

Cold season is here and sometimes the flu vaccine and washing our hands just aren’t enough to keep colds at bay. If you do get sick, make sure the over-the-counter (OTC) medication you take doesn’t damage your liver while it’s relieving your cold symptoms

Acetaminophen (brand name Tylenol) is the most popular painkiller in the United States. (In other parts of the world it is known as Paracetamol.) Not only is it found in the 8 billion acetaminophen pills Americans take each year to reduce aches and pains, it’s also found in cough and congestion medications. When we have hepatitis B, we need to be careful we don’t unintentionally overdose when we take acetaminophen pills and cough or sinus medications. Continue reading "It’s Flu Season: Protect Your Liver from Unintentional Acetaminophen (Tylenol) Overdose"

Ten Things People with Hepatitis B Need to Know in 2016

Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net
Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net

In 2015, doctors continued to unlock the mysteries of hepatitis B and uncovered promising new treatments. Armed with new information, here are 10 things we can do in 2016 to safeguard our health and help prevent the spread of hepatitis B.

  1. Get monitored regularly. No one likes a blood draw or to be reminded they have hepatitis B, but it’s important that you’re tested annually or more often if you have a high viral load and/or signs of liver damage. There’s no cure yet, but there are effective treatment options with more in the pipeline. So be brave, protect your health, and go to the lab for a blood test.
  2. If you’ve been prescribed an antiviral, don’t forget to take it. Taking a pill every day is tedious and it’s tempting to skip it, but failing to take your daily antiviral reduces its effectiveness and can lead to drug resistance. The hepatitis B virus is a master at mutating to escape whatever is attacking it. Forgetting to take your daily pill can lead to an uptick in your viral load and liver damage. Stay strong, take your daily pill, and keep that virus undetectable.
  3. Face it, antivirals are a long-term commitment. Until a cure is developed, antivirals—either tenofovir (Viread) or entecavir (Baraclude)—are the best treatment to quickly reduce both viral load (HBV DNA) and liver damage. But they work for only as long as we take them, and once we start, we are usually committed to years of treatment. Quitting antivirals before we’ve achieved undetectable viral load and lost the hepatitis B surface antigen (HBsAg) often results in a resurgence of both viral load and liver damage. Antivirals are a long-term treatment that help prolong our lives.
  4. Demand to be screened for liver cancer. Some experts say current medical guidelines that recommend when we should be screened for liver cancer  don’t go far enough to protect us. So take charge of your health and ask for a liver cancer screen, which includes a semi-annual blood test and an ultrasound.  Hepatitis B-infected Asian men (or of Asian descent) over age 40 years and Asian women over age 50 years, patients with a family history of liver cancer, patients with cirrhosis, and Africans over the age of 20 should all be screened. Think you’re not at risk for cancer because you take antivirals? Think again. Antivirals help reduce liver damage, but if you’ve had cirrhosis or are older, the risk of liver cancer remains.
  5. If someone promises a new cure or treatment that sounds too good to be true….it probably is. In our search to be rid of hepatitis B, we may be tempted to yield to clever marketing and try a supplement that promises to cure us. But first, do your homework and practice precaution. To check out an herbal supplement, visit the National Center for Complementary and Integrative Health’s website to see what scientific evidence exists for a supplement and talk to your doctor. There is no magic bullet that will cure hepatitis B. Experts hope to find one soon, but for now be patient and stay skeptical. If you want to safeguard your health, eat healthy foods and avoid alcohol and cigarettes.
  6. Experts say a cure is coming … so stay informed about new drug developments and clinical trials. There is lots happening on the research front. To find out what drugs are in the development pipeline, visit the Hepatitis B Foundation’s Drug Watch page for the latest news. You can also find out if you qualify for a clinical trial. Expensive blood work, treatment medications, and doctor’s visits are usually free-of-charge for those accepted into a study. The foundation features a list of hepatitis B-related clinical trials that are recruiting patients in the U.S. and around the world at its Clinical Trials page. You could become part of the cure.
  7. Pregnant with hepatitis B? Get your viral load tested and ask your doctor about antivirals. In November, the American Association for the Study of Liver Disease (AASLD) for the first time recommended that pregnant women with viral loads (HBV DNA) higher than 200,000 IU/mL (or 1 million copies/mL) receive an antiviral (either tenofovir or telbivudine) starting at their 28th week of pregnancy. The antivirals won’t hurt you or your baby and will reduce the risk that your baby will be infected with hepatitis B to nearly zero, as long as your baby gets the first dose of the hepatitis B vaccine and a dose of HBIG (hepatitis B antibodies) within 12 hours of birth.
  8. Fight discrimination against hepatitis B and know your rights. Hepatitis B should never be a barrier to the education or job you want. Sadly, ignorance and stigma remains in the U.S. and abroad. It depends on us, our friends, and our family, to stand up and fight for our civil rights. We can’t back down. If we don’t fight, who will?
  9. Practice safe sex and never re-use needles. Today, in some areas of the U.S., hepatitis B is increasing—even though a safe and effective vaccine exists. Unfortunately, not everyone is immunized and the infection is still getting transmitted sexually. In the midst of America’s heroin epidemic, it’s also spreading when syringes are re-used and shared. Do you want to end hepatitis B? Make sure your friends and family members know how to prevent sexually-transmitted infections (even if those conversations are challenging, their lives may depend on it) and support needle exchange programs in your region and state. Countless studies show that when needle exchange programs are available, HIV, hepatitis B and C rates decline! It saves lives and healthcare dollars!
  10. Be brave, disclose, and get your friends, family, and lovers screened for hepatitis B and vaccinated. Yes, it will be one of the hardest conversations you will ever have, but if you are infected with hepatitis B, you need to disclose your infection to people who may be at risk. If you just discovered you have chronic hepatitis B, which you may have contracted at birth, you need to tell your siblings and your mother and get them screened and immunized if needed. Dating someone, and about to take the next step? You need to disclose ahead of time and give them information and choices. It builds trust and it’s the right thing to do. You would want the same for yourself.

Continue reading "Ten Things People with Hepatitis B Need to Know in 2016"

Buyer Beware: When Someone Claims to Have a Hepatitis B Cure, It’s a Counterfeit Drug

Image courtesy of africa, at FreeDigitalPhotos.net
Image courtesy of africa, at FreeDigitalPhotos.net

Twenty years ago when I found out my daughter had chronic hepatitis B, I would’ve purchased any drug I could find to cure her.  I asked her doctor if she could join a pediatric clinical trial for lamivudine. I just wanted her cured as soon as possible. Fortunately, cooler heads prevailed.

My daughter didn’t need treatment then, and she doesn’t need it today. Her doctor was wise enough not to try an antiviral with an unknown track record that was later found to cause high rates of drug resistance. It would have caused more harm than good.

When we want hard to believe in something—especially a medicine that is advertised to cure hepatitis B–we end up listening to our hearts and not our heads.

Many people touched by hepatitis B around the world don’t have an expert to be the voice of reason and wisdom when they hear about false, counterfeit, or untried treatments for hepatitis B. Sadly, there is a steady increase in false marketing claims on Facebook and other websites using testimonials and marketing ploys to sell a counterfeit hepatitis B cure to we who are vulnerable, frightened, and desperate for a quick cure.

We at the Hepatitis B Foundation know this all too well. The public can post on our Facebook and blog pages. Often, unscrupulous people pitching ineffective cures will try to post a personal claim endorsing some doctor’s or herbalist’s new cure. Here’s a recent, verbatim example of a post to our Facebook page:

“Just wanna express my moment of joy for (having) been cured from the deadly HEPATITIS B.  I have been infected with the Disease over three years and already lost hope (because) I have already tried so many ANTIVIRAL treatment…. one day while making more research online, I came across a testimony of a patients Dr … cured from GENITAL HERPES and I decided to give the said doctor a call….”

As you might expect, the writer claims to have been miraculously cured by the doctor using an antiviral drug called hepantivir, for example. But this drug has no scientific credentials. It has never been studied or tested or reported on in medical journals. But “experts” promise it will cure hepatitis B for $800.

We at the foundation remove these posts as soon as we discover them. These herbal supplements and counterfeit drugs can look very official, with medical-sounding names and packaged to appear like true pharmaceutical products.  The advertising often features a photo of a doctor to appeal to a local audience. But they’re fake, and some of these “products” can even make you sicker than before you started the alleged, miracle drug.

In 2013, a study by the United Nations Office on Drugs and Crime that focused on Africa and South-East Asia suggested the counterfeit drug market in Africa was worth about $4 billion (USD).  A report found that in 2009, in Nigeria, 60 out of 225 (27 percent) antimalarial medications failed chemical analysis, and in Ghana, 14 out of 17 (82 percent) antimalarial drugs followed suit.

Their deceit is cruel and criminal, especially when it targets frightened people who may have no access to treatments or advice. In the U.S., drugs must be approved by the U.S. Food and Drug Administration. To win that approval, randomized, clinical trials that compare outcomes of treated patients to untreated patients (the control group), are needed to prove a drug actually does helps people. This is the gold standard of medical evidence.

That careful FDA review does not, however, apply to herbal supplements. One day, some of these supplements may indeed be found to have beneficial effects to protect the liver against hepatitis B after rigorous study and experiments. But that research hasn’t happened yet.

The U.S. National Institutes for Health has published a directory about what scientific research has discovered about common herbal supplements. Probably the most popular herbal supplement pitched as a liver remedy is milk thistle, and its extract silymarin. The NIH milk thistle report found, “Previous laboratory studies suggested that milk thistle may benefit the liver by protecting and promoting the growth of liver cells, fighting oxidation (a chemical process that can damage cells), and inhibiting inflammation. However, results from small clinical trials of milk thistle for liver diseases have been mixed, and two rigorously designed studies found no benefit.”

A true scientific evaluation is what we need to hear, even when we desperately want milk thistle or another supplement to be the cure. There is no magic bullet that is going to cure hepatitis B. It is a complex infection with no cure at this time. Experts are making great strides and hope to find a cure in the next few years, but now, this is the time to let our heads make healthcare decisions, instead of our vulnerable and hopeful hearts.

So be patient. Don’t fall for false promises, even when they’re accompanied by professional-looking photographs and emotional testimonials. If it sounds too good to be true, it probably is.

More information about counterfeit medications:

Quality Matters: Battling the Epidemic of Illegal Online Drug Sellers and Counterfeit Medicines  Of the 35,000-50,000 active online drug sellers, 97 percent do not comply with U.S. laws and 50 percent of medicines sold online are fake or counterfeit, according to the Alliance for Safe Online Pharmacies (ASOP Global), an international non-profit headquartered in Washington, D.C. with operations in Europe and Asia.

These counterfeit medications are often manufactured in unsafe conditions; contain too little, too much or no active pharmaceutical ingredients; and, in many cases, have been found to contain dangerous substances like floor wax, rat poison, concrete, chalk, boric acid, road tar, paint, anti-freeze, and other toxins. This means that consumers worldwide are just a click away from buying products that may cause harm, treatment failure or even death. Read more…

Fight the Fakes Campaign:  Fight the Fakes is a campaign to raise awareness about the dangers of fake medicines. The campaign gives a voice to those who have been personally impacted and shares the stories of those working to put a stop to this threat to public health. It seeks to build a global movement of organizations and individuals who will shine light on the negative impact that fake medicines have on people around the globe and to reduce the negative consequences on individuals worldwide.

As part of this effort, Fight the Fakes is collecting and sharing the stories of those who are impacted by fake medicines and are speaking up. The website also serves as a resource for organizations and individuals who are looking to support this effort by outlining opportunities for action and sharing what others are doing to fight fake medicines.

Is Your Family Getting Together for the Holidays? Time to Discover Your Medical History

Image courtesy of stockimages at FreeDigitalPhotos.net
Image courtesy of stockimages at FreeDigitalPhotos.net

When we have chronic hepatitis B, knowing our family medical history can give us an inside edge to fight this infection.

Hepatitis B is an infection that often runs in families, and knowing how our parents or grandparents handled this liver disease can give us insider information about our own genetic prospects with hepatitis B.

Experts estimate that more than half of us worldwide became infected at birth. Our mothers may have been infected with hepatitis B and immunization, which can prevent infection if administered within 12 hours of birth, was not available to us as newborns, nor to our mothers or grandmothers. Continue reading "Is Your Family Getting Together for the Holidays? Time to Discover Your Medical History"

The Veterans Administration Ignores an Enemy on the Homefront: Hepatitis B

Courtesy of the U.S. Defense Health Agency.
Courtesy of the U.S. Defense Health Agency.

With Veterans Day comes reports about the lack of adequate mental health care for men and women returning from war. There is another, invisible health issue threatening veterans of all ages–hepatitis B.

Few veterans have ever been screened or treated for hepatitis B though their infection rate is four-times the national average.

The percentage of veterans infected with hepatitis B may actually be higher, but no one knows. Only 15 percent of U.S. veterans have ever been screened for hepatitis B. Among the few screened and diagnosed with chronic hepatitis B, only 25 percent have received antiviral treatment and only 13 percent have been screened for liver cancer. Continue reading "The Veterans Administration Ignores an Enemy on the Homefront: Hepatitis B"

First World Hepatitis Summit Focuses on Global Plan for Elimination by 2030

The joint North and South Americas group build relationships across borders to eradicate hepatitis B.
The North and South Americas group builds relationships to eradicate viral hepatitis.

The mood was euphoric. It was a love fest, actually. Last week, more than 600 policy makers, public health experts, and representatives from non-governmental organizations and patient advocacy groups from 80 countries were invited to participate in the first World Hepatitis Summit in Scotland hosted by the World Hepatitis Alliance in partnership with the World Health Organization (WHO). The Hepatitis B Foundation was pleased to be invited and to speak during the pre-summit meeting as well.

The message was serious. Hepatitis B and C kill more people each year than HIV/AIDS and tuberculosis, and combined are the seventh-leading cause of death worldwide, yet viral hepatitis as a global health concern remains mostly invisible and under-funded. Continue reading "First World Hepatitis Summit Focuses on Global Plan for Elimination by 2030"

Growing Older with Hepatitis B: Why Testing for Liver Damage Still Matters

Image courtesy of Witthaya Phonsawat at FreeDigitalPhotos.net
Image courtesy of Witthaya Phonsawat at FreeDigitalPhotos.net

Around the world, older adults bear the greatest burden of hepatitis B. Born before the childhood vaccination became available, about 4.7 percent of U.S. adults over age 50 have been infected and their chronic hepatitis B rate is nearly two-fold higher than in younger adults.

The 50-plus generation has lived with with chronic hepatitis B for decades, and over time their risk of liver damage, cirrhosis, and cancer has steadily increased. That is why it is very important that older adults living with this infection see their physicians regularly and have tests for liver damage and cancer performed as needed. Continue reading "Growing Older with Hepatitis B: Why Testing for Liver Damage Still Matters"

“How Did You Get Hepatitis B?” Why We Should Answer

Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net
Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net

By Christine Kukka

Telling someone you have hepatitis B is almost always followed by the question, “how did you get it?”

The question can feel like an invasion of privacy or an indictment. Behind the question lurks a desire for reassurance that hepatitis B won’t happen to them, but of course it can. And that’s why we should answer and tell our story.

On a global scale, the story of hepatitis B is the story of humanity. How we and our forebears became infected results from centuries of human migrations, the transatlantic slave trade, political upheaval, poverty, re-used medical devices and ineffective public health policies. Continue reading "“How Did You Get Hepatitis B?” Why We Should Answer"

Preparing for College, Dating and Disclosing Hepatitis B

Image courtesy of jesadaphorn at FreeDigitalPhotos.net
Image courtesy of jesadaphorn at FreeDigitalPhotos.net

When my daughter, who has chronic hepatitis B, packed for her freshman year of college, I peppered her with warnings about the need for standard precautions and condoms. I suggested wording for a future conversation where she would disclose her infection and negotiate safe sex with a potential partner.

I hoped these verbal dress rehearsals would empower and protect her, especially if that potential boyfriend turned her down. I wanted her to know that any rejection would not be about her or her hepatitis B, it would be about his fears. Continue reading "Preparing for College, Dating and Disclosing Hepatitis B"