Site Search

You searched for "hepatitis D"

• Help Eliminate Hepatitis in the New year

  … encourage others to: Despite being the most common liver disease in the world, just 10% of those infected are aware that they are living with hepatitis B. It is very important that people with hepatitis B are tested - especially because hepatitis B does not have any symptoms. Start small by encouraging your family members and loved ones to get tested or offering to go with a friend to their doctor’s appointment. If you want to help on a larger scale, you can volunteer with local health organizations who are active in the hepatitis community.          Perhaps your friends and family have already been tested and      found out that they are not - and have never been - infected. That’s great! Now, it’s time to make sure that they get vaccinated to protect themselves. Remind them to schedule an appointment to receive their vaccine, and check in on them to make sure that they receive all necessary doses. Increasing global vaccination rates - especially in high-risk communities - is essential to meeting the 2030 elimination goals. Put Your Social Media to Good Use: Technology is one of the best and most powerful communication tools that we have. Consider spreading positive, accurate messaging about hepatitis B in the new year to help destigmatize the disease, raise awareness, and combat false information. Start simple by liking, retweeting, and sharing posts by groups that are working hard to educate others!  Be sure to follow reputable organizations so that the information you are receiving and passing on is correct! Join the Hepatitis B Foundation community on Facebook, Twitter, and Instagram for international updates and Hep B United on Facebook, Twitter, and Instagram for hepatitis B information in the United States!    For those of you who may be struggling to cope with your diagnosis or are dealing with stigma and discrimination around your diagnosis, the suggestions above may not be for you. Instead, consider taking 2020 to empower yourself

  http://www.hepb.org/blog/help-eliminate-hepatitis-new-year/
• Hep B & HIV CoInfection: Get Tested Today!

  Each year, World AIDS Day is held on December 1st to raise awareness about HIV and AIDS.  HIV/AIDS still remains a large problem, with nearly 40 million people living with the infection. Hepatitis B (HBV) remains a large issue as well, with 292 million people living with the chronic infection. Despite the inadequate amount of resources or attention that hepatitis B receives, it is important to talk about it whenever we discuss HIV/AIDS.  Why? Any individual already living with hepatitis B or HIV can also contract the other infection. This is called a coinfection, and it can have serious consequences if not addressed. Let’s look at HIV/HBV coinfection by the numbers:  Globally, 10% of those living with HIV are also living hepatitis B  Courtesy of New England Journal of Medicine's article titled: HIV–HBV Coinfection — A Global Challenge Coinfection rates can be as high as 25% in countries where both infections are common Up to 50% of injection drug users have an HBV/HIV coinfection  Chronic hepatitis B progression can be up to 5 times faster in coinfected individuals compared to those living with just hepatitis B  HIV vs Hep B: What’s the Difference?  Hepatitis B is a viral infection of the liver that can increase one’s chances of liver disease and liver cancer.  HIV is a virus that attacks the immune system and kills the cells that are needed to fight off disease and infection. Though they are two different viruses, they can be spread in similar fashions: direct contact with infected blood, via sexual transmission, injection drug use, and through mother to child transmission during childbirth. Hepatitis B is primarily spread through mother-to-child transmission, HIV is most commonly spread by unprotected sex. Among those living with a coinfection, sexual transmission and injection drug use are the most common modes of transmission. Because of the similar transmission routes, it is recommended that people living with HIV be tested for hepatitis B

  http://www.hepb.org/blog/hep-b-hiv-coinfection-get-tested-today/
• How To Talk To Your Doctor About Hep B in 5 Minutes

  … liver.  You should always be aware of what type of doctor you are talking to as well. Some primary care doctors may be more experienced in chronic hepatitis B management than others. Gastroenterologists and hepatologists are the experts in the liver. It is recommended that individuals living with hepatitis B see a hepatologist but if this is not possible, a knowledgeable primary care doctor should be able to monitor you. If you feel that the doctor you are seeing is not experienced in managing hepatitis B, do not hesitate to ask them to review the official management guidelines with you, or to switch doctors. Your health is valuable and should be treated as such!  When To See the Doctor Immediately In some cases, those living with chronic hepatitis B can experience symptoms such as jaundice (yellowing of the skin or eyes), ascites (fluid in the abdomen that gives it a hard, round appearance), or severe vomiting and diarrhea. If any of these symptoms occur, it is extremely important to get to a doctor or healthcare professional as soon as possible. Severe symptoms indicate that immediate blood work is needed to prevent severe liver damage or liver failure. Remember that liver disease and liver cancer are both manageable if diagnosed early and monitored regularly, so it is important to attend regular doctor appointments, keep a clear record of your medical history, and become your own health advocate by empowering yourself with knowledge and getting involved in your care! 

  http://www.hepb.org/blog/talk-doctor-hep-b-5-minutes/
• Protecting Yourself From Liver Cancer While Living with Hepatitis B

  … liver. However, it is important to note that not everyone living with hepatitis B needs treatment. Current treatments have been proven to be most effective when there are signs of active liver damage. Hepatitis B can be managed through regular monitoring by a knowledgeable doctor and lifestyle changes that can go a long way in protecting your body.  Early detection of liver cancer is extremely important. The average 5-year survival rate once diagnosed with liver cancer ranges from 10% -14%. However, with early detection and proper treatment, those numbers rise to over 50%! This significant difference is because if liver cancer is caught early, a doctor can link you to life-saving treatments including chemotherapy, surgical options, ablation techniques, intra-arterial therapies or a liver transplant. Regular monitoring by a knowledgeable doctor will hopefully identify the markers of liver cancer before it occurs, but if you are living with liver cancer, there are treatment options and resources available to you.  Preventing Liver Cancer  Educating oneself is the first step in prevention! If you have hepatitis B, be aware of the risk factors and behaviors that can increase your likelihood of liver damage and liver cancer, such as consuming alcohol and high amounts of junk food, and lack of exercise. Non-Alcoholic Fatty Liver Disease (NAFLD) can also increase your risk of cancer, so it is important to discuss NAFLD risk factors and prevention tips with your doctor. Groups such as the CDC Division of Viral Hepatitis and the American Association for the Study of Liver Diseases all provide free fact sheets, call lines, and literature by experts that can help you understand what may be occurring in your body and to make educated choices. You can also check out our Liver Cancer Connect resource for more information or for liver cancer support.  The hepatitis B vaccine is also the first anti-cancer vaccine ever created! Remember that the vaccine is typically given in a

  http://www.hepb.org/blog/protecting-liver-cancer-living-hepatitis-b/
• #Tri4ACure: Racing For Hepatitis B Awareness & Cure Research

  On September 8th, 2019, Edwin Tan participated in one of the toughest and most exhausting triathlons in the world: the Ironman. The Ironman consists of a 2.4-mile swim, a 112-mile bicycle ride, and a marathon 26.22-mile run raced in that order. It was Edwin’s first time racing in an Ironman, and although it took him over 13 hours - on a cold, rainy day - to finish, he did not give up!  The completion of the Ironman race marks the end of Edwin’s #Tri4aCure journey, which officially began in June 2019. Since the beginning of the summer, Edwin has competed in 6 races - over 336 miles - to raise money and awareness for hepatitis B research, patient outreach, and education; we are extremely proud of his accomplishments!  Edwin Tan - a 29-year-old mechanical design engineer from Minneapolis, Minnesota - was diagnosed with hepatitis B in 2014. Like many others, Edwin’s diagnosis came as a surprise. After he learned his hepatitis B status, Edwin decided to learn all that he could about the infection. Through his research, he found that one of the best ways to keep his liver healthy was through small lifestyle changes. Edwin began to pursue healthier life choices by increasing the amount of exercise he was getting and paying closer attention to his diet.  Edwin’s decision to compete in an Ironman was driven by his hepatitis B journey. Researching the topic made him aware of the lack of education and extreme stigma surrounding the illness. The Ironman was a testament to the strength, endurance, & determination that those living with hepatitis B display each day.  “The theme of this race for me was perseverance, which I felt was fitting for my hepatitis B story, “ said Edwin. “Completing an Ironman, which is regarded as one of the most difficult one-day athletic events, serves as a good example that we each can accomplish anything we want as long as we believe in ourselves.”  In addition to being one of the Foundation’s supporters, Edwin is also a

  http://www.hepb.org/blog/tri4acure-racing-for/
• Hepatitis B Foundation Mourns Loss of Co-Founder Paul Witte, Longtime New Hope Resident

  Mr. Witte gave generously of his talents and resources to help create the Hepatitis B Foundation, a remarkable organization and a lasting tribute to a truly remarkable person.  Doylestown, Pa., Feb. 15, 2021 – The Hepatitis B Foundation announces with great sadness the passing of Mr. Paul Witte, 94, on Feb. 13. An award-winning industrial and product-design engineer, Paul never hesitated to share his talents and resources to help create the Foundation as an important advisor and generous philanthropist. In 1991, Paul and his wife Janine worked with Tim and Joan Block to start the Hepatitis B Foundation to help a young family devastated by this serious liver disease. What began as a grassroots effort in their kitchen has today, 30 years later, become the nation’s leading nonprofit research and disease advocacy organization solely dedicated to finding a cure for hepatitis B, headquartered in Bucks County, Pa. “The Foundation has become the global authority on hepatitis B and a strong, growing organization, which is a lasting tribute to Paul, a truly remarkable person,” Tim Block, President of the Foundation, said. “Paul will be remembered as an extremely creative person, and his extraordinary skills were evident in his professional life.”    Paul and Janine Witte Paul received design awards from both Industrial Design magazine and the Museum of Modern Art for his work. As a product design engineer, Paul was responsible for the popular Head aluminum tennis racquets in the 1970s, when using the lightweight metal in racquets was a significant innovation. During the 1980s, Paul focused his talents on the orthopedic industry. He joined a dynamic team with Dr. Michael Pappas and Dr. Frederick Buechel at Biomedical Engineering Trust in N.J. Over the next several decades, he designed orthopedic hip implants and eventually designed almost every other joint in the body as well. “Paul was a uniquely talented individual, an extraordinarily generous person, warm, caring and a friend," Joel Rosen, Chairman of the Foundation's Board of Directors, said. "He will be deeply missed by me and all of us at the Foundation.” Paul was born in Chuquicamata, Chile, where his father worked as an engineer for the Anaconda Copper Company. Their family returned to Scranton, Pa., and eventually to Philadelphia. Paul began engineering studies at Drexel University, which was interrupted by military service (he served in the Army Air Corp during World War II), then completed his studies at the Philadelphia College of Art (now the University of the Arts). One of the best decisions Paul always liked to say he made was when he married Janine, whom he met while traveling to Corning, N.Y. They had a fairytale romance and lived a true love story in New Hope, Pa. They enjoyed 42 years as life partners and work partners in their product design and desktop publishing company, Originetics. Paul was always designing and creating, his brain active, hands drawing and sketching out new ideas, even at social events. He also was one of the most selfless, generous people. He and Janine responded immediately to the story of a local family suffering from hepatitis B, even though they had no experience of their own with the disease. All they needed to hear was that hepatitis B was a major need and little was being done. With their active participation, the Foundation was created. Janine served as the first President and remained on the Board until 2018. In addition to the many contributions of time, talent and insights Paul provided to the Foundation, he and Janine were major donors, funding the Witte Scholars and the Bruce Witte Lecture series. The Witte Scholars program is for young, emerging scientists to work at the Foundation’s affiliated research arm, the Baruch S. Blumberg Institute. Anand Mehta, D. Phil., and Hai-Tao Guo, Ph.D., were two young scientists who started their careers as Witte Scholars. Today, Dr. Mehta is an endowed professor at the Medical University of South Carolina, studying the early detection of liver cancer and Dr. Guo is a tenured professor at the University of Pittsburgh, studying hepatitis B. The Bruce Witte Lectureship, named in memory of Paul’s son who passed away as a toddler, brings world-famous scientists studying hepatitis B and liver cancer to give seminars to the Foundation and the Blumberg Institute. This year’s Bruce Witte Lecture will be given on Oct. 14 by Harvey Alter, M.D., Distinguished NIH Investigator, Emeritus, and 2020 co-recipient of the Nobel Prize in Medicine for his discovery of the hepatitis C virus (he also helped discover the hepatitis B virus more than 50 years ago). If you wish to make a gift in Paul Witte's memory to the Hepatitis B Foundation, please click here to make an online donation or mail a check to: Hepatitis B Foundation, Attn: Paul Witte Memorial Gifts, 3805 Old Easton Road, Doylestown, PA 18902.

  https://www.hepb.org/news-and-events/news-2/hepatitis-b-foundation-mourns-loss-of-co-founder-paul-witte-longtime-new-hope-resident/
• الوقاية واللقاحات

   How can I get hepatitis B? Hepatitis B is an infectious disease caused by a virus that is spread through blood. Listed below are the most common ways hepatitis B is passed to others: Direct contact with infected blood or infected bodily fluids  From an infected mother to her newborn baby during pregnancy or delivery  Unprotected sex with an infected partner  Shared or re-used needles (for example, sharing needles for illegal drugs or re-using needles that are not properly sterilized for medicine, acupuncture, tattoos, or ear/body piercing)  Unsterilized medical equipment or needles that may be used by roadside doctors, dentists or barbers   Is hepatitis B transmitted casually?No, hepatitis B is not spread through casual contact. You cannot get hepatitis B from the air, hugging, touching, sneezing, coughing, toilet seats or doorknobs. You cannot get hepatitis B from eating or drinking with someone who is infected or from eating food prepared by someone who has hepatitis B. Who is most likely to become infected with hepatitis B? Although everyone is at some risk for getting hepatitis B, there are some people who are more likely to get infected. Your job, lifestyle, or just being born into a family with hepatitis B can increase your chances of being infected. Here are some of the most common "high risk" groups -- but please remember that this is not a complete list: People who are married to or live in close household contact with someone who has hepatitis B. This includes adults and children. People who were born countries where hepatitis B is common, or whose parents were born in countries where hepatitis B is common (Asia, parts of Africa and South America, Eastern Europe, and the Middle East).  People who live in or travel to countries where hepatitis B is very common (Asia, parts of Africa and South America, Eastern Europe, and the Middle East). Sexually active adults and teenagers  Men who have sex with men  Infants born to infected mothers  Healthcare workers and others who are exposed to blood in their jobs. Emergency personnel  Patients who are on kidney dialysis Residents and staff of group homes, institutions, or correctional facilities. Recipients of blood transfusions before 1992, or more recent recipients of improperly screened blood Injection drug users, past and present  People who get tattoos or body piercing  People who use roadside doctors, dentists or barbers   What are the recommendations for the hepatitis B vaccine? The hepatitis B vaccine is recommended for all infants and children up to age 18 years by the World Health Organization (WHO) and the U.S. Centers for Disease Control and Prevention (CDC). The CDC also recommends that adults in high-risk groups be vaccinated. The hepatitis B vaccine is a safe and effective vaccine that is recommended for all infants at birth and for children up to 18 years. The hepatitis B vaccine is also recommended for adults living with diabetes and those at high risk for infection due to their jobs, lifestyle, living situations, or country of birth. Since everyone is at some risk, all adults should seriously consider getting the hepatitis B vaccine for a lifetime protection against a preventable chronic liver disease.   Is the hepatitis B vaccine safe? Yes, the hepatitis B vaccine is very safe and effective. In fact, it is the first “anti-cancer vaccine” because it can protect you from hepatitis B, which is the cause of 80% of all liver cancer in the world. With more than one billion doses given throughout the world, medical and scientific studies have shown the hepatitis B vaccine to be one of the safest vaccines ever made.   What is the hepatitis B vaccine schedule?The hepatitis B vaccine is available at your doctor's office and local health department or clinic. Three doses are generally required to complete the hepatitis B vaccine series, although there is an accelerated two-dose series for adolescents age 11 through 15 years, and there is a new 2-dose vaccine that was approved by the U.S. Food and Drug Administration (FDA) for use in adults in 2017. It is important to remember that babies born to infected mothers must receive the first dose of hepatitis B vaccine in the delivery room or within the first 12 hours of life. 1st Shot - At any given time, but newborns should receive this dose in the delivery room2nd Shot - At least one month (or 28 days) after the 1st shot3rd Shot - Six months after the 1st shot (or at least 2 months after the 2nd shot) There must be at least 16 weeks between the 1st and 3rd shot. If your vaccine schedule has been delayed, you do not need to start the series over, you can continue from where you have left off – even if there have been years between doses. To be certain that you are protected against hepatitis B, ask for a simple blood test to check your “hepatitis B antibody titers” (HBsAb) which will confirm whether the vaccination was successful.   What else can I do to protect myself from hepatitis B? Since hepatitis B is spread through infected blood and infected body fluids, there are several simple things that you can do to protect yourself from possible infection until your vaccination is complete: Avoid touching blood or any bodily fluids directly Use condoms with sexual partners Avoid illegal drugs and prescription drug misuse, including injection of such drugs Avoid sharing sharp objects such as razors, toothbrushes, earrings, and nail clippers Make sure that sterile needles and equipment are used for medicine, the dentist, acupuncture, tattoos, ear and body piercing Wear gloves and use a fresh solution of bleach and water to clean up blood spills  Wash your hands thoroughly with soap and water after touching or cleaning up blood Most importantly, make sure you receive the hepatitis B vaccine!      كيف يمكن أن أصاب بالتهاب الكبد "ب"؟ التهاب الكبد "ب" هو مرض معدٍ ينتج عن العدوى بفيروس ينتشر عن طريق الدم. ترد أدناه الطرق الأكثر شيوعًا لانتقال التهاب الكبد "ب" إلى الآخرين: الملامسة المباشرة لدم شخص مصاب أو سوائل جسمه  من الأم المصابة إلى طفلها أثناء الحمل أو الولادة  ممارسة الجنس دون وقاية مع شخص مصاب  مشاركة الإبر أو إعادة استخدامها (على سبيل المثال، مشاركة الإبر للعقاقير المحظورة أو إعادة استخدام الإبر التي لم يتم تعقيمها بشكل صحيح لأخذ الأدوية أو العلاج بالوخز الإبري أو الوشم أو ثقب الأذن/الجسم)  الأدوات أو الإبر الطبية غير المعقمة التي يمكن أن يستخدمها أطباء الطوارئ المتنقلون أو أطباء الأسنان أو الحلاقين هل ينتقل فيروس التهاب الكبد "ب" بشكل عرضي؟ لا، لا ينتقل التهاب الكبد "ب" عن طريق الملامسة العرضية. لا يمكن أن تصاب بالتهاب الكبد "ب" من الهواء أو المعانقة أو اللمس أو العطس أو السعال أو مقاعد المراحيض أو مقابض الأبواب. ولا يمكن أن تصاب بالتهاب الكبد "ب" من تناول الطعام أو الشرب مع شخص مصاب أو من خلال تناول الطعام الذي أعده شخص مصاب بالتهاب الكبد "ب".     مَن الأشخاص الأكثر عرضة للإصابة بالتهاب الكبد "ب"؟  على الرغم من أن الجميع معرضون لخطر الإصابة بالتهاب الكبد "ب"، إلا أن هناك بعض الأشخاص الأكثر عرضة للإصابة به. يمكن أن يزيد عملُك أو نمطُ حياتك أو مجرد ولادتك في عائلة مصابة بالتهاب الكبد "ب" من احتمالات إصابتك. وفيما يلي بعض من أكثر المجموعات "المعرضة لخطر مرتفع من الإصابة" شيوعًا - ولكن يُرجى تذكر أن هذه ليست قائمة كاملة: الأشخاص المتزوجون أو الذين يكونون على اتصال وثيق مع شخص مصاب بالتهاب الكبد "ب"، ويتضمن ذلك البالغين والأطفال. الأشخاص الذين ولدوا في البلدان التي يكون فيها التهاب الكبد "ب" شائعًا، أو الذين ولد آباؤهم/أمهاتهم فيها، وهي (آسيا وأجزاء من إفريقيا وأمريكا الجنوبية وأوروبا الشرقية والشرق الأوسط).  الأشخاص الذين يعيشون في بلدان يكون التهاب الكبد "ب" فيها شائعًا جدًا أو يسافرون إليها (آسيا وأجزاء من إفريقيا وأمريكا الجنوبية وأوروبا الشرقية والشرق الأوسط). البالغون والمراهقون النشطون جنسيًا  الرجال الذين يمارسون الجنس مع رجال آخرين  الرضع المولدون لأمهات مصابات  العاملون في مجال الرعاية الصحية وغيرهم ممن يكونون معرضين للتعامل مع الدم أثناء تأدية عملهم. موظفو الطوارئ  المرضى الذين يخضعون للغسيل الكلوي سكان وموظفو المساكن الجماعية أو المؤسسات أو المرافق الإصلاحية. متلقو عمليات نقل الدم قبل عام 1992، أو المتلقون الأحدث لدم تم فحصه بشكل غير صحيح متعاطو المخدرات بالحقن، في الماضي والحاضر  الأشخاص الذين يحصلون على وشم أو ثقب في الجسم  الأشخاص الذين يستعينون بأطباء الطوارئ المتنقلين أو أطباء الأسنان أو الحلاقين   ما التوصيات الخاصة بلقاح فيروس التهاب الكبد "ب"؟  توصي كل من منظمة الصحة العالمية (WHO) والمراكز الأمريكية لمكافحة الأمراض والوقاية منها (CDC) بلقاح التهاب الكبد "ب" لجميع الرضع والأطفال حتى سن 18 عامًا.وتوصي المراكز الأمريكية لمكافحة الأمراض والوقاية منها أيضًا بلقاح البالغين من المجموعات المعرضة لخطر مرتفع من الإصابة. إن لقاح التهاب الكبد "ب" لقاح آمن وفعال يوصَى به لجميع الرضع عند الولادة والأطفال حتى سن 18 سنة. ويوصى أيضًا بلقاح التهاب الكبد "ب" للبالغين المصابين بمرض السكري وأولئك المعرضين لخطر مرتفع من الإصابة بسبب طبيعة عملهم أو نمط حياتهم أو ظروفهم المعيشية أو البلد التي وُلدوا فيها. وبما أن الجميع يكونون معرضين لنسبة خطر من الإصابة، يجب على جميع البالغين التفكير جديًا في تلقي لقاح التهاب الكبد "ب" للتمتع بحماية تدوم مدى الحياة من مرض كبدي مزمن يمكن الوقاية منه. هل لقاح التهاب الكبد "ب" آمن؟  نعم، لقاح التهاب الكبد "ب" آمن وفعال للغاية. في الواقع، يُعد هذا أول "لقاح مضاد للسرطان" لأنه يمكن أن يحميك من التهاب الكبد "ب"، الذي يسبب نسبة 80% من جميع حالات سرطان الكبد في العالم. فنتيجة لإعطاء أكثر من مليار جرعة في جميع أنحاء العالم، أظهرت دراسات طبية وعلمية أن لقاح التهاب الكبد "ب" هو أحد أكثر اللقاحات أمانًا على الإطلاق. هل يمكن أن أصاب بالتهاب الكبد "ب" من اللقاح؟ لا، لا يمكن أن تصاب بالتهاب الكبد "ب" من اللقاح. تم صُنع اللقاح من منتج خميرة اصطناعي في مختبر. الآثار الجانبية الأكثر شيوعًا هي الاحمرار والشعور بألم في الذراع عند موضع تلقي الجرعة. ما الجدول الزمني لتلقي لقاح التهاب الكبد "ب"؟ يتوفر لقاح التهاب الكبد "ب" في عيادة طبيبك والإدارة أو العيادة الصحية المحلية. وعلى الرغم من وجود سلسلة مُعجَّلة مكونة من جرعتين للمراهقين الذين تتراوح أعمارهم ما بين 11و15 عامًا، يلزم تلقى ثلاث جرعات بشكل عام لإكمال سلسلة اللقاح بلقاح التهاب الكبد "ب"، ويتوفر أيضًا لقاح جديد مكون من جرعتين حصل على موافقة إدارة الغذاء والدواء الأمريكية (FDA) بشأن الاستخدام لدى البالغين عام 2017. من المهم أن نتذكر أن الرضع المولودين لأمهات مصابات يجب أن يتلقوا الجرعة الأولى من لقاح التهاب الكبد "ب" في غرفة الولادة أو خلال أول 12 ساعة من الحياة. الجرعة الأولى - يتم إعطاؤها في أي وقت، ولكن يجب أن يتلقى الأطفال حديثو الولادة هذه الجرعة في غرفة الولادة الجرعة الثانية - يتم إعطاؤها بعد شهر واحد على الأقل (أو 28 يومًا) من تلقي الجرعة الأولى الجرعة الثالثة - يتم إعطاؤها بعد ستة أشهر من الجرعة الأولى (أو بعد شهرين على الأقل من الجرعة الثانية) يجب مرور 16 أسبوعًا على الأقل بين الجرعة الأولى والجرعة الثالثة. في حالة تأخر جدولك الزمني لتلقي اللقاح، فلا داعي لبدء سلسلة اللقاح من جديد، يمكنك المتابعة من حيث توقفت، حتى إذا كانت هناك سنوات بين الجرعات. للتأكد من أنك محمي من الإصابة بالتهاب الكبد "ب"، اطلب إجراء اختبار بسيط للدم لفحص "عيارات الأجسام المضادة لفيروس التهاب الكبد (ب)" (HBsAb) والذي سيؤكد ما إذا كان اللقاح ناجحًا أم لا. ما الذي يمكنني فعله أيضًا لحماية نفسي من الإصابة بالتهاب الكبد "ب"؟ بما أن التهاب الكبد "ب" ينتقل عن طريق دم الشخص المصاب وسوائل جسه، فهناك العديد من الأشياء البسيطة التي يمكنك إجراؤها لحماية نفسك من العدوى المحتملة حتى تكتمل سلسلة اللقاح الخاصة بك: تجنب الملامسة المباشرة لدم أو سوائل جسم الشخص المصاب  استخدام الواقي الذكري عند ممارسة الجنس  تجنب العقاقير المحظورة وإساءة استخدام العقاقير التي تستلزم وصفة طبية، بما في ذلك حقن مثل هذه العقاقير  تجنب مشاركة الأدوات الحادة مثل شفرات الحلاقة وفرش الأسنان والأقراط ومقصات الأظافر  التأكد من استخدام الإبر والأدوات المعقمة عند إعطاء الأدوية وممارسات طبيب الأسنان والعلاج بالوخز الإبري والوشم وثقب الأذن والجسم  ارتداء القفازات واستخدام محلول جديد من المبيِّض (سائل معقم) والماء لتنظيف الدم المنسكب  غسل اليدين جيدًا بالماء والصابون بعد لمس الدم أو تنظيفه  !"والأهم من ذلك، الحرص على تلقي لقاح التهاب الكبد "ب  

  https://www.hepb.org/languages/arabic/page-593/
• Commentary on the Cure

  What Happened to the Cure for Hepatitis B? By Timothy Block, PhD, Chari Cohen, DrPH, MPH, & Maureen Kamischke - May 2020 Just 10 years ago, interest in finding a cure for hepatitis B virus (HBV) spiked. Western interest in Asia, where HBV is an enormous health problem, and the growing prosperity in China, fueled global excitement and possibility. The success of curative therapies for hepatitis C virus further raised expectations that a cure for HBV was within reach, as well. Were those expectations unrealistic? Was there over-promising? Where are we now? We all want an HBV cure that makes people living with HBV at no greater risk for liver disease, including liver cancer, than people without HBV. Since determining if a drug can actually achieve that kind of clinical benefit would take too long (perhaps a decade or more), a more practical definition of cure has emerged. This is the “functional” cure, which relies upon specific “markers” or “surrogates” of disease. It is hoped this surrogate provides a “prediction” of a clinical cure.  So, is even a “functional” cure a realistic goal? It is now known that even the currently available medicines for HBV can achieve the sustained “off drug, sustained virological responses” embodied in the “Functional Cure,” in at least some individuals. However, this occurs in only a small number of people. We hasten to add that research is making it clearer who with HBV would be likely to experience this benefit from the currently available drugs. But more research and innovation are critical. Recent advances in the scientific understanding of new viral and immunological antiviral targets, and new experimental systems, are leading to innovations in drug discovery. We know of at least 48 drugs currently in development, of which 27 are already in clinical trials! This is a huge leap from 2010 (See Table 1). Moreover, the new drugs are not just “me too” drugs, repurposed from research in other disease areas. Many are “First in class,” hitting HBV therapeutic targets that have never been previously attempted. This shows just how far we have come, and how much more HBV research is being conducted today compared to 10 years ago. However, finding treatments and cures is a challenge and a long road – and we must be prepared for ups and downs. The likelihood that a specific drug for any disease or condition will be effective, let alone be a “cure,” is fairly low. Fewer than one in five drugs that make it to clinical trials are ever “approved” by the FDA for use. And we are likely going to need a combination of drugs that complement each other in order to have even a functional cure for HBV. So, we need many more than just one drug to survive the development process. We have little doubt that important, effective new drugs that help with sustained virological responses, and greatly improve clinical outcome, are possible, and are being developed. However, as confident as we are about what is possible, we want to be honest about how difficult and expensive this process is, and the extent to which progress is constantly threatened.  As new drugs fail in their clinical trials, which is inevitable, pharmaceutical and drug development companies may become frustrated. New, more “business” attractive diseases and pathogens may emerge. Business investment may lag. And each new health crisis will distract from HBV research and add additional temptations and priorities, that will distract from the cause of an HBV cure. The COVID-19 crisis is an example. HCV was a previous example. To keep the research going, we need other sources of funding support – this could include multi-country federal funding and support from corporations and nonprofit health-focused funds. Unfortunately, there continues to be little interest to prioritize hepatitis B – which is baffling for a disease the impacts almost 300 million people worldwide and kills almost 900,000 people each year. We suspect this has something to do with the lack of a global voice for hepatitis B. We need people who are impacted by hepatitis B around the globe to raise their voice and demand that hepatitis B be prioritized as a global health threat. This can help motivate country leaders and funders to put forth more resources and support towards finding a cure. In the past decade, impressive progress toward an HBV cure has been made, but we are not there, yet. Until recently, commercial, philanthropic and government investment has lagged – and there is still not enough prioritization or funding to eliminate hepatitis B. This is a call to action for us, at the Hepatitis B Foundation, and those around the world that we engage with. We cannot let up on our effort. It is critical that organizations such as the Hepatitis B Foundation, ICE-HBV, World Hepatitis Alliance and others – as well as individuals around the world - keep up the advocacy. Together, we remain steadfast in our efforts, and hope to keep filling the pipeline of innovations, as scientists work towards finding a cure for HBV.  About the Authors Timothy Block is president and co-Founder of the Hepatitis B Foundation and Baruch S. Blumberg Institute. Chari Cohen is senior vice president of the Hepatitis B Foundation and associate professor of the Baruch S. Blumberg Institute. Maureen Kamischke is director of international engagement of the Hepatitis B Foundation.   In the Spotlight Save the Date for the 2018 Crystal Ball: Friday, April 6, 2018PineCrest Country Club Lansdale, PA

  https://www.hepb.org/news-and-events/commentary-on-the-cure/
• Le dépistage de l'hépatite B

  Le dépistage de l'hépatite B  Existe-t-il une analyse de sang pour dépister l'hépatite B ? L’hépatite B peut être dépistée par une simple analyse de sang que votre médecin ou votre clinique peut prescrire. Il s'agit du « profil sérologique du virus de l'hépatite B ». Cette analyse peut être réalisée au cabinet de votre médecin. Trois analyses sont comprises dans ce profil sérologique. Le médecin peut parfois demander à refaire l’analyse six mois après la première visite pour confirmer les résultats. Si vous pensez avoir récemment contracté le virus de l'hépatite B, il peut s'écouler jusqu'à neuf semaines avant que le virus puisse être détecté dans votre sang. Il peut être compliqué de comprendre les résultats de votre analyse de sang, surtout que vous voulez être sûr(e) du diagnostic. Êtes vous infecté(e) par le virus de l'hépatite B ? Avez-vous déjà été infecté(e) et guéri(e) ? Souffrez-vous d'une hépatite B chronique ? En outre, il peut être utile de demander une copie des résultats de votre profil sérologique pour comprendre lesquels sont positifs ou négatifs. Quelles sont les trois analyses comprises dans le « profil sérologique du virus de l'hépatite B » ? Pour le profil sérologique du virus de l'hépatite B, un échantillon de sang suffit. Le profil comprend trois analyses nécessaires pour établir un diagnostic final : HBsAg (antigène de surface du virus de l'hépatite B) HBsAb ou anti-HBs (anticorps de surface du virus de l'hépatite B) HBcAb ou anti-HBc (anticorps nucléocapsidique du virus de l'hépatite B) Qu'est-ce que l'antigène de surface du virus de l'hépatite B (HBsAg) ?  Un résultat HBsAg « positif » ou « réactif » signifie que vous êtes infecté(e) par le virus de l'hépatite B. Il peut s'agir d'une infection aiguë ou d'une infection chronique. Les personnes infectées peuvent transmettre le virus par leur sang. Qu'est-ce que l'anticorps de surface du virus de l'hépatite B (HBsAb ou anti-HBs) ? Un résultat HBsAb (ou anti-HBs) « positif » ou « réactif » signifie que vous avez bien réagi au vaccin contre l'hépatite B ou que vous vous êtes déjà remis(e) d'une hépatite B aiguë. Ce résultat (avec un HbsAg négatif) signifie que vous êtes immunisé(e), c'est-à-dire protégé(e), contre une future infection éventuelle par le virus de l'hépatite B.  Qu'est-ce que l'anticorps nucléocapsidique du virus de l'hépatite B (HBcAb) ? Le HBcAb est un anticorps qui fait partie du virus. Par conséquent, il ne vous protège pas.Un résultat HBcAb (ou anti-HBc) « positif » ou « réactif » indique une infection actuelle ou passée. L'interprétation de ce résultat dépend des deux autres résultats. S'il apparaît avec la présence d'un anticorps de surface qui vous protège (HBsAb ou anti-HBs positif), il signifie que vous avez déjà contracté le virus par le passé et que vous êtes guéri(e). Si vous êtes porteur (porteuse) d'une infection chronique, il apparaîtra en même temps que le virus (HBsAg positif). Hepatitis B Blood Tests  Is there a blood test for hepatitis B? There is a simple hepatitis B blood test that your doctor or health clinic can order called the “hepatitis B blood panel”. This blood sample can be taken in the doctor’s office. There are 3 common tests that make up this blood panel. Sometimes the doctor may ask to check your blood again six months after your first visit to confirm your hepatitis B status. If you think you have been recently infected with hepatitis B, it can take up to 9 weeks before the virus will be detected in your blood. Understanding your hepatitis B blood test results can be confusing, so you want to be sure about your diagnosis – are you infected with hepatitis B, have you recovered from a hepatitis B infection, or do you have a chronic hepatitis B infection? In addition, it is helpful if you request a written copy of your blood tests so that you fully understand which tests are positive or negative. What three tests make up the "hepatitis B blood panel"? The hepatitis B blood panel requires only one blood sample but includes three tests that are needed to make a final diagnosis: HBsAg (hepatitis B surface antigen) HBsAb or anti-HBs (hepatitis B surface antibody) HBcAb or anti-HBc (hepatitis B core antibody) What is the hepatitis B surface antigen (HBsAg)?  A "positive" or “reactive” HBsAg test result means that the person is infected with the hepatitis B virus, which can be an "acute" or a "chronic" infection. Infected people can pass the virus on to others through their blood. What is the hepatitis B surface antibody (HBsAb or anti-HBs)? A "positive" or “reactive” HBsAb (or anti-HBs) test result indicates that a person has either successfully responded to the hepatitis B vaccine or has recovered from an acute hepatitis B infection. This result (along with a negative HbsAg result) means that you are immune to (protected from) a future hepatitis B infection. What is the hepatitis B core antibody (HBcAb)? The HBcAb is an antibody that is part of the virus- it does not provide protection. A "positive" or "reactive" HBcAb (or anti-HBc) test result indicates a past or present infection. The interpretation of this test result depends on the results of the other two tests. Its appearance with the protective surface antibody (positive HBsAb or anti-HBs) indicates prior infection and recovery. For chronically infected persons, it will usually appear with the virus (positive HBsAg).  

  https://www.hepb.org/languages/french/blood-test/
• Patient Stories

  I am a 37-year-old, single, gay, white male living in Washington, DC. In November of 2005 I woke one morning to discover a hint of yellow in my eyes. I went to my doctor a couple of days later, by which time my skin had started turning yellow. My doctor took blood samples for testing and they came back positive for Hepatitis B. Over the next few weeks I got sicker and sicker...and turned a horrible shade of yellow. I have never felt so sick in my life. The rest of 2005 was spent at home, sleeping much of the day. In addition to rest, I made some radical changes to my diet to help with digestion and ease the strain on my liver. Of course the first thing to go was the alcohol. In consultation with a nutritionist friend of mine, and my doctor of course, I gave up eating all meats and eventually gave up dairy. I ate a lot of vegetables, soups, whole grains/pasta, brown rice, oatmeal, tofu, soy, etc. I stopped drinking anything with caffeine and limited my sugar intake, including not overdoing it on too much fruit initially. Even though I gave up a lot, I was eating more frequently and was careful to make sure I was eating a balanced diet. I had never eaten so healthy in my life. Eventually I ended up losing 60 pounds just from changing my diet. But I never felt like I was starving or that I had deprived myself...it was just a new outlook on nutrition. For years I have tried many different diets, but none was nearly effective as this. In addition to the dietary changes, I also started taking acidophilus, plant enzymes, milk thistle, and vitamin C with each meal. When I was first diagnosed on November 21, 2005, my bilirubin (total) was 12.0, my AST was 768, and my ALT was 1756. My bilirubin level eventually hit 19.2 and then all my levels started going down by the end of December. In February my bilirubin dropped to .8 and my AST was 101 and ALT 231. By the time June 2006 came around, my AST was 152, my ALT was 311...and my viral load was a staggering 830,000,000...yes, 830 million! Well, I was considered to be chronic and my doctor started me on a combination of Epivir HBV and Hepsera. By the time of my next tests in August 2006, my AST had dropped to 29, ALT dropped to 70, and my viral load went way down to 6,800. All this time, I continued my diligence with nutrition and my diet. By this time I was eating vegan a majority of the time, but not exclusively. I was maintaining my weight loss...and started introducing seafood in my diet. The Epivir HBV and Hepsera were still part of my daily routine. My next tests were in November 2006, when my AST was 18, ALT 16 and viral load had dropped below 100. Also at this time, the tests came back negative for the E-antigen, but I was still also negative for any antibodies. Then came something nothing short of miraculous. Just recently, in February 2007, my test results came back positive for the antibodies...the virus had been eradicated...I was cured! My doctor went on to explain that they look for the antibody level to be above 10...and mine was 884! My AST and ALT levels were normal. As you can imagine, I was thrilled, my doctor was thrilled. Everything I have read confirmed what my doctor told me...this does not happen very often! One-and-a-half years after being diagnosed, and 7 months after starting the Epivir HBV and Hepsera, I was cured. I had been prepared for a lifetime of taking these drugs and closely monitoring the hepatitis to try and prevent any liver damage. But now those two pill bottles just sit in my cupboard as a reminder to me. I am convinced that my diligence with nutrition and diet went a long way to give my liver and my body as much help as possible in fighting this. That, combined with the drugs, and some help from God, have provided me with a miracle. I have maintained the weight loss the entire time (and am trying to lose just a few more pounds to reach a personal goal). As my doctor said, I have eliminated a number of risk factors from my life, such as heart disease, diabetes, etc. I am healthier now than before I was diagnosed with hepatitis B. I have had some alcohol to toast this momentous occasion...and I have a very low tolerance for it now, having abstained for so long! Throughout the last year-and-a-half, I have read many different stories from others dealing with hepatitis B. I wanted to share my story...in hopes that others might find it as helpful and inspiring as I have found those that I have read. I have been a single parent of a wonderful son for 13 years. I always dreamed of adopting a daughter and began the process of adoption a year ago. Because I was requesting an “older child” of five or six, I was enrolled in a special program through my agency for children who may be considered “unadoptable. I conducted an exhaustive research into the issue of adopting “older” children including attachment disorders and the potential for learning issues. I received a referral of a four year old beautiful little red head who looked right at ME from the photograph. I fell immediately in love. Then came “the news.” She was in the special program because she was diagnosed with chronic hepatitis B. I asked my agency caseworker what – exactly – was hepatitis B? She was unable to give much clarity to the situation, so I began another exhaustive research into this disease with which I was only very vaguely familiar. An Internet search led me to many websites and stories that, quite frankly, scared me and dissuaded me from considering becoming this child’s Mommy. But, then, I found the Hepatitis B Foundation. I wrote a frantic e-mail with questions and concerns, which was answered in less than 24 hours with a phone call from the HBF staff. In soothing tones backed by facts and statistics, I was led through the ins-and-outs of hepatitis B. Bottom line: I proceeded with the adoption based on the knowledge that the Hepatitis B Foundation armed me with and I THANK YOU! My daughter is strong, healthy, loving, and a true blessing to my son and me. She has been evaluated by the pediatrician and is scheduled for her first pediatric hepatologist (liver specialist) appointment. Based on the foundation’s advice, I had my son’s blood tested to make sure his hepatitis B vaccine worked, and I also received the vaccination series myself. In fact, my three sisters also received the vaccinations! Am I scared? Yes. But I now know what exactly to be scared of and am confident that I can handle it. (That is, except for the stuff in the coming years inherent in raising a teenage girl!) Potential adoptive parents hear it over and over, “Adoption is a leap of faith.” Children may enter our families with various challenges, learning issues, attachment concerns. So adoptive parents sometimes have to just close their eyes, open their hearts, and leap. I took that leap and adopted a PERFECT little girl who just happens to have chronic hepatitis B. And I wouldn’t trade her for anything!! To the Hepatitis B Foundation, please accept my sincerest gratitude for the resources you shared, the guidance you gave, and for helping me to accept the referral of my beautiful and loved daughter! Sincerely,A Grateful Mom OnsetIn the spring of 1984, I noticed that a beer I was drinking tasted strange. About the same time I began to feel like something was pressing against my stomach. Gradually, I began to lose my appetite and thought, “Uh-oh, I'm coming down with the stomach flu.” This went on for several weeks. My job then was in a Texas institution for the mentally retarded where I worked as a nurse. My work routines began to seem burdensome and small things irritated me. Each night when I got home I was just beat. In June of that year, when I had just turned 54, I scheduled a minor surgical procedure for a Friday, figuring that I’d be completely recovered and ready to go back to work on Monday. When Monday came and I hadn’t recovered, I knew something was really wrong because I was a healthy person and used to bouncing back quickly. I went to see my doctor who thought I might have an ulcer. He asked for a urine specimen and I noticed how brown it looked. The next morning, my doctor called and gave me the news: I had tested positive for hepatitis B. During report time at work, I told my head nurse and fellow nurses. The atmosphere in that room changed instantly. The nurses visibly shrank from me as though I were a leper and my head nurse, looking grave, said that I’d probably be off work for a long time. It was surprising how little we knew about the disease. IllnessMy head nurse was right. It was fall before I was able to even consider going back to work. Despite the initial diagnosis of a “mild” hepatitis B case, I was literally unconscious for a good part ofmany days. One day when we were in the grocery store, all my energy suddenly vanished, as though a plug had been pulled and it had all drained out. And so it went, week after week after week. I felt I was fighting some unseen enemy that was bent on my destruction. The uncertainty of never knowing when it would strike sapped my confidence horribly. It was like living at the end of a leash of indeterminate length so that I never knew when I’d reach the end and be unmercifully jerked back again.Over time, through repeated bad experiences, I learned to store up energy by staying in bed a certain length of time before doing anything, and then to rest up afterwards. Normally, a person gets that “second wind” when the liver releases stored glucose into the bloodstream. That’s what gives us stamina. With a damaged liver we don’t have that reserve. When it’s gone, it’s gone. RecoveryThe onset of hepatitis B, according to my medical dictionary, is described as “insidious” meaning “coming on gradually or almost imperceptibly”. That definition could describe my recovery as well. It was two steps forward and one step back for about two years. In October I returned to work. At first, I only worked a few hours at a time, just long enough to administer all the evening medications. Over the next six weeks or so, I gradually increased the amount of time I spent at work. However, it finally became apparent to me that I just wasn’t up to the job any longer and I resigned at the end of November. In December, my longtime partner Nick and I went to Mexico. We had no reservations, spoke almost no Spanish and sometimes walked long distances carrying our luggage. Despite these hardships, I will never forget this trip, for many reasons, both good and bad.Shortly after the trip, my son’s mother-in-law, who owned the house I was renting, passed away. Instead of leaving her property toher daughter, she put it in a trust fund managed by the bank. The bank then raised my rent 75%, which forced me to move out. Moving, under the best of circumstances, is something I bothdread and abhor. It would have been difficult enough, given my health problems, even if we had just rented another house in town. Instead, Nick and I bought a piece of completely undevelopedproperty 100 miles away. It had no utilities, no buildings, and was far out in the country on a badly rutted road. Only people as naïve as Nick and I would have undertaken such a venture, but that’s justwhat we did. To this day I do not understand how I found the strength to get through the months that followed buying this property. We first bought a trailer (the only house I ever owned) and had it moved out to the property. Living in a trailer was certainly a brand new experience for me. I spent many an anxious hour through storms willing it not to turn over and crush us to death. When I say storms, Imean the most spectacular displays of lightning I’ve ever seen and rains so torrential they literally prearranged the landscape. Despite it all - with many days when I felt so crappy - I loved it there. Big ChancesBy late winter of 1986, all of the romantic walks through fields of waist-high wildflowers, nights of star-gazing and the surreal feeling of living in a western movie were not enough to disguise howdesperate our situation was beginning to be. The money was running out and Nick was spending more and more time with some less-than savory neighbors. When my daughter Valerie and her husband Dwight came to visit us in February, she was frankly worried about my condition but didn’t say so. That spring I crashed. My depression became so acute that in desperation I called the suicide hotline in Austin. This turned out to be one of the best decisions I ever made. I was directed to a place where I was evaluated. Though I cannot nowremember who recommended a liver biopsy or why, I had one done.The diagnosis was “some inflammation” that seemed to be healing. I was told that I had “chronic persistent” hepatitis B, and from what the doctor said, I was given to believe that the condition could gradually resolve over time. There was no treatmentprescribed. I continued to take the vitamin and mineral supplements that I had taken for years, plus herbs that were supposed to be especially beneficial for liver health: dandelion root, tumeric andmilk thistle. Later that month I visited Valerie and Dwight in New York City. While there, we got word that my mother had died and that she had divided all the money evenly between my sister and me. I was frankly surprised that my mother left me anything, but it was a lifesaver. From then on my life began to change dramatically. Moving OnThat summer I saw a notice in the paper about a course in Silva (self) Mind Control that intrigued me. It opened doors for me in bringing my awareness to my unconscious negative thinking and programming and taught me how to meditate. With this newfound power, I decided to embark on yet another career. My nursing days were gone and I was open to something new that better suited my belief in holistic health and medicine. I moved back to Austin and enrolled in a one-year program for massage therapy. This course exposed me to principles of Chinese medicine and to various forms of energywork. It also put me in a community of people who were there for me when my life with Nick began painfully falling apart. From the time I started massage school, I was also getting massage therapy work done myself. It had the effect of letting me out of a cage that had imprisoned me my entire life. My self-confidencesoared. I became increasingly interested in eastern religion and metaphysics. During this time my family considered a move to the West Coast to open a bed and breakfast inn. When Valerie and Dwight bought a house in the Columbia River Gorge of Oregon, I planned to jointhem on the venture, knowing that I could contribute my skills of cooking, gardening and massage. It seemed like a dream come true: being able to work and live with my family. In June 1989, at age 59, I moved to Oregon to manage the house until my family’s arrival. I did not know one soul in Oregon, but the scenery was magnificent. That first summer, I began landscaping theproperty, painting deck furniture and doing more things to fix up my new home than I can list. The following year, Valerie became pregnant after 12 years of marriage. The announcement shocked me to my knees. The dream I was living had come to an end before it began -- my family neverdid move to Oregon after all. RelapseIn June of 1992, Valerie and I took a trip to Washington State while Dwight took care of their toddler at the Oregon house. While we were on that trip, some old familiar symptoms began to reappearand I feared the worst; the hepatitis was coming back. By late summer my liver enzymes were the highest they’d ever been and I was diagnosed with “chronic-active” hepatitis B. By then I was definitely sick. My date book for that time tells a dramaticstory. There were lunch and dinner dates, house guests, massages, After that there was nothing but blank pages. I sat in my chair. That’s all I did. My doctor at the time was a naturopath and an acupuncturist. He told me, “You don’t have to die from this.” This was valuable to hear because my medical books painted a fairly grim picture for chronic active hepatitis. Dr. S. told me that it was very important that I rest, rest, and rest some more. He put me on a very digestible diet and I had acupuncture treatments to balance my liver meridian. When he learned that the root of a native plant had antiviral properties, he told me to take that, too. In October, I arranged to see a gastroenterologist from Portland. He examined me and noted petechia on my upper back and redness of my palms, which he said were signs of some liver damage. Neither he nor any doctor I had seen thought I had cirrhosis. We discussed all the medical options available at the time, including interferon treatment. I decided none of them sounded right for me. For one thing, they were all very expensive, required frequent trips to the doctor, and could cause a worsening of hepatitis once the treatment had ended. He didn’t discourage me from what I wanted to do: continue with my good diet and supplements and manage my energy as carefully as I could. This last bout changed my body. I gained at least fifteen pounds and I could function only half of each day. Up until then I had looked and felt 15 or 20 years younger than I was. Now it was no longer true. I just never regained the kind of stamina for regular exercise classes, though I did (and still do) yoga at home. Better OffOne thing I love to do is writing. There was a period when I wrote daily and extensively in one journal after another. And I’ve always been an extensive letter writer. Now, sitting weakly in mychair, writing became my therapy and my salvation. I wrote essays. I wrote poetry, including Haiku. I wrote stories and recorded my dreams. I also practiced mindfulness, noting what feeling I had when they came up, and paying attention to what made me tired and when was the best time for me to do things. Since I had more energy in the morning, that’s when I’d do every active thing possible. I cooked practically all my food in advance, knowing that if I didn’t, I would be living on sandwiches and candy bars, and not get the vegetables and grains and good things that I needed. I learned to break big jobs into a lot of small ones and not let things build up. I’ve truly learned how much more enjoyable life is when you focus your attention fully one thing at a time. I’ve learned to space out whatever I have to do. If I’m very active one day, I might do more sedentary things the next. This takes planning ahead but it really helps me live on an even keel. So even with hepatitis, I’mprobably better off as a whole than I was before. Philosophical OutlookIn the fall of 1989, with the Oregon house sold, I moved to Connecticut where I now live in my own apartment attached to Valerie and Dwight’s house. I have constructed a rather extensive garden here and I have an enjoyable life. My last blood test showed my liver enzymes at normal range. I still take a nap most afternoons, but not always. This year, when I turned 75, I was finally able to giveup smoking. While I wouldn’t wish hepatitis on anyone, I probably have the resources and temperament to handle it better than many could. It’s natural to ponder what I might have been if I hadn’t gotten the disease, but my philosophical approach is to look at what it has given me, not what it has taken away. I’ve learned to enjoy what I have rather than pining for what I don’t have. Life since hepatitis may be less wide but it is certainly a lot deeper. Getting hepatitis was not completely the end of my life, as I knew it, but the beginning of a new life -- one with different challenges, yes, but also with some special rewards. Who knows what the future holds? No life comes with a guarantee, does it? There was a time when Arline Loh of Wilmington, Del., didn't tell people she has hepatitis B. "It carries such a stigma," says Loh, 57, an information technology expert who retired three months ago because of liver damage caused by the disease. "Hepatitis B is classified as an STD (sexually transmitted disease)." It can be transmitted sexually, but Loh contracted the disease at birth from her mother, who carried the virus. About 90% of babies who are infected at birth develop chronic infection, compared with 6% of those infected later in life. Until recent years, there was little the medical profession could do to help. Loh says the doctor who diagnosed her 17 years ago told her to "rest, and maybe you'll get better." That has changed. Today there are five medications for hepatitis B, including two approved in 2005. "Now, I don't want to be silent," Loh says. "Now there are drugs available to manage and treat this disease." Like hepatitis C, hepatitis B can cause long-term, chronic infection that can lead to severe liver damage, cirrhosis or liver cancer. The diseases can go undetected for decades because they often cause no symptoms until serious liver damage has occurred. "We're seeing an epidemic of both advanced cirrhosis and liver cancer," says Fred Poordad, chief of hepatology in the Center for Liver Disease and Transplantation at Cedars-Sinai Medical Center, Los Angeles. "I expect this to only get worse over the next 10 years" as the baby boomer population ages. Hepatitis B disproportionately affects Asians and Pacific Islanders, who account for over half of the more than 1.3 million carriers of the virus, says hepatitis researcher Samuel So, director of the Asian Liver Center at Stanford University School of Medicine. Hepatitis rates among Asian-Americans are higher because the rates are high in many of their countries of origin, according to the Asian Liver Center. China, where Loh was born, bears the world's highest rate of hepatitis B, he says. About one in 10 are infected, and about half a million people there die each year. "We call it the silent killer," So says. "Many people who are infected don't know it because they feel perfectly healthy." Studies show that 10% to 20% of Asian-Americans have chronic hepatitis B infection. And carriers with no symptoms can unwittingly pass it on to their sexual partners or to their children. Routine blood tests don't include the specific test to detect hepatitis B, he says, so patients should ask for it.Hepatitis is caused by viruses that attack the liver, causing inflammation. There are several types of the virus, labeled alphabetically A through E. But all of them initially can cause temporary symptoms such as fatigue, appetite loss, nausea and abdominal discomfort, dark urine and jaundice, or a yellowing of the skin and eyes. There are vaccines for types A and B. An advisory committee of the Centers for Disease Control and Prevention last fall strengthened its recommendations to increase use of both vaccines. Now, all babies, not only those in states with high hepatitis rates, will be immunized against hepatitis A at 12 months to 23 months old. Also, hepatitis B vaccine will be required for all newborns and adolescents who missed their baby shots. Hepatitis B vaccine also is recommended for adults, especially those in high-risk groups. Vaccination has helped reduce rates of hepatitis A from 143,000 cases in 2000 to 61,000 in 2003, and of hepatitis B from an average of 260,000 new cases a year in the 1980s, when the vaccine was licensed, to about 73,000 in 2003, the CDC says. But the most common type of hepatitis is C, and for that there is no vaccine. As many as 4 million Americans and 170 million people worldwide may be infected, Poordad says. "There are still 30,000 to 40,000 new cases a year. Much of it stems from recreational drug use as well as immigrants to the U.S. who come already infected." He says hepatitis C is the most common cause of end-stage liver disease requiring transplantation. Yet here, too, there is hope, he says. "There's been a flurry of research activity" investigating promising new drugs and drug cocktails, he says, and "we've gone from treatments that are less than 10% effective to therapies now that are 50% effective." Some strains of the virus can be eliminated in patients. "We feel if we can eradicate the virus," Poordad says, "we call that a cure."That's what's happened for Robert Hartmann, 42, of Los Angeles, who owns the Improv Comedy Club chain. He contracted the disease after having dental work in 1977. It was undetected until 1992. "They didn't have a lot of treatment options," he says, so he didn't begin drug therapy for another 10 years. Now, after 16 months of combination drug therapy, he has been virus-free for a year and a half. "That's why the message needs to get out that, guess what — get tested for hep C because the cure rate goes up every year," he says. "The sooner you get tested, the better chance you have of beating this without damage to your liver." *Since this story was written, Arline Loh lost her battle with liver cancer, on October 15, 2013. Arline was a passionate hepatitis B advocate who was also a founding member of the Hepatitis B Foundation's One Hundred Chinese Families and Friends campaign, and was recognized as a "Champion of Change" by the White House. My life completely changed on November 16 1997. I still remember that Sunday morning. I was going to have my breakfast when, suddenly, I fainted. Two weeks later, I had a rash over my whole body and my eyes and skin were yellow. I went to a doctor who ordered an ultrasound and blood tests. He recommended that I stay one week at the hospital. My diagnosis: hepatitis A with a co-infection of hepatitis B. At the time I did not understand what my doctor said, but I remember him saying “You will recover from hepatitis A, but what concerns me is your hepatitis B because it does not have a cure. Many people die from liver cancer and cirrhosis as a consequence of hepatitis B.” I was only 21 years old and can express in three words my feelings - I was shocked! I was also very frustrated because for the second time in 18 months, I had to interrupt my university studies in Chemical Engineering. Several doctors stopped by my hospital room to ask me questions about my personal life. They asked if I was a drug-addict and how many sex partners I had. The truth is, I was not a drug addict and I had never had sex. It is very important to mention this because it is wrongly assumed that you can only get hepatitis B through drugs and unprotected sex. I spent many years crying, complaining, blaming and playing the role of victim, until I realized that there are just two solutions for situations like this: you sit and cry or, you enjoy the beauty of being alive and make every day count. I decided on the second choice. In Guatemala it is not possible to get the HBV DNA and other important blood tests for this chronic disease. Fortunately, I have been very lucky. I have the best parents, family and friends who helped me travel to other countries to monitor my situation. Last year I needed to get a liver biopsy and I promised that if the results were negative for cirrhosis, I would live to make two of my dreams come true: to study a specialization in hepatitis B and to create a foundation in my country. The day I can help to make sure that my country can provide free hepatitis B screenings, vaccines, and affordable treatments, I will feel that I did not pass through a couple of inconveniences in my life for nothing. After receiving good news about my biopsy results, I happened to read the foundation’s B-Informed newsletter and was suddenly inspired to send an email to Dr. Block telling him about my dreams. Honestly, I never imagined that he was going to answer my email! I still remember how happy I felt when he answered my email almost immediately. My dreams are coming true with the support and motivation of Dr. Block and his wife Joan, co-founders of the Hepatitis B Foundation. For years this foundation has been not only a source of information about hepatitis B, but a place and group of people who really care about those living with chronic hepatitis B. This makes me feel that I am not alone. Thank you! Finally, I am healthy enough to continue my normal life. I have been working as a science teacher for five years and just completed my Bachelor’s degree this past November. I think that now is the moment to start my voyage to the world of hepatitis B research. How could it possibly happen? Every precaution and care was taken. Matt, our only child with hepatitis B, had been monitored since he was two and a half months old. Three generations in our family had been tested and vaccinated for the virus. Then, suddenly and without warning, our middle son Andrew was diagnosed with hepatitis B related liver cancer. How? How? How? We had felt so lucky. Matt, born in Korea, joined our family in 1984. Soon after he came home, he was diagnosed as a hepatitis B carrier. At that time hepatitis B was a fairly new phenomenon on the American pediatric scene and there were many unknowns. By the time Matt started school, we had found the Hepatitis B Foundation and the Liver Cancer Prevention Center at Fox Chase Cancer Center.where he was given a physical exam, and blood was drawn to monitor for liver involvement. In 1985 our family grew again. Andrew, 7, and his sister Jenny, 6, arrived from Korea, and the same pediatrician tested for hepatitis B. We were happy to hear their tests were negative, and both Andrew and Jenny were vaccinated. We thought nothing more of it. A son-in-law and two grandchildren joined our family and were all vaccinated. Matthew turned 20, still showing no hepatitis B side effects. All was well. We were so lucky. Fall of 2002Then on Sept. 2, 2002, Andrew, woke complaining of abdominal pain. By then I had six children and had been a mother for over 30 years. Stomachaches were routine. I suggested he get dressed and go to work; maybe he would feel better. But by the time breakfast was over, Andrew was in such pain that his sister took him to the emergency room and by the afternoon he was admitted to the hospital. I was stunned when two doctors came to tell us Andrew tested positive for hepatitis B. A biopsy confirmed a diagnosis of stage IV hepatocellular carcinoma [liver cancer] metastasized to the lungs. An earlier diagnosis could have meant surgery or a transplant, but now chemotherapy was our only option, and even then it only shrank the tumor in a small percentage of patients. Our best chance was a clinical trial and a miracle. Neither was to be. By the time Andrew qualified for a trial, his liver function was so low he was rejected. Andrew Lee Wise died at home on Dec. 11, 2002. He was only 24 years old. But that is not the end of our story. After Andrew's cancer diagnosis, I called our former pediatric group to see the results of all the original hepatitis B tests. Their office said the lab's records before 1992 were no longer available. One doctor gave me a handwritten copy of their file reports and said, "See! Their tests were negative. Matthew's was positive." I read it for myself: "Hep B Surface Antibody Negative." Just surface antibody negative means nothing! It is the combination of results from the surface antibody, core antibody, and surface antigen tests that determines a person's hepatitis B status. I felt and still feel like screaming. How could a leading pediatric group in a university town get it right in 1984 and so wrong in 1985 and 2002? One Year LaterOur family has been devastated by Andrew's death. We are weary and wary, and painfully aware his life could have been prolonged, and might have been saved had his pediatricians recognized he was a hepatitis B carrier. The lessons we learned were painful and need to be passed on, but the experience is rare. What advice do we have? Older adoptees and their families should re-test for the virus. Be sure you see and understand the tests and results [and ask for copies]. Vaccinate the entire family. Stay informed about the latest research on hepatitis B. And enjoy life. When our youngest daughter Mary was in high school, our youth minister asked, "What was the best gift you ever got?" Mary replied, "Andrew, Jenny and Matthew." We are still very lucky parents. Excerpted with permission from "One Family's Story: Coping with Hepatitis B" by Helen Wise inHi Families Magazine (Jan/Feb 2004), published by Holt International Children's Service at www.holtintl.org. Editor's Note: The Hepatitis B Foundation thanks the Wise family for graciously sharing their story so that other families can learn from their personal tragedy: it is important that adoptive parents are absolutely certain of their child's hepatitis B status. Re-testing may be necessary. Be sure to ask for copies of all hepatitis B blood tests and confirm the results with your doctor. For further assistance, please feel free to email the Hepatitis B Foundation at info@hepb.org or call 215-489-4900. A Profile in Courage: Andrew Lee Wise1978- 2002Andrew Lee Wise Lee, Seung-hoon was born March 4, 1978 in Seoul, Korea. Andrew, as he is now known, and his sister Jenny joined the Wise family in Princeton, N.J., in December 1985. These excerpts from his journals, conversations, and e-mails chronicle his struggle with the news in late 2002 that he had liver cancer. Andrew Lee Wise died Dec. 11, 2002, at the age of 24. Sept. 22, 2002-I wanted to send this letter, personally, to let each and every one of you know [my] biopsy confirmed liver cancer. If you are bewildered, shocked, upset, concerned, scared, anything at all, let me assure you that I am too. However, I have come to realize that this is just a battle and a battle that I can win and will win with God, my family and my friends. Oct. 6-I have good news: I was accepted to the Cancer Institute of New Jersey (RWJUH) for treatmentOct. 9. Oct. 25-I went into RWJUH October 7, two days earlier than expected [for] chemoembolization of theright lobe of my liver. I was pretty drugged up and cannot remember anything. Once I got home.extreme amount of pain.really tough.a high temperature. Nov. 14-I hope that everyone is able to enjoy the few beautiful autumn days that have come aroundrecently. However, a bit of bad news-the three spots originally seen in the scans on my lungs-they have grown since the first treatment. Nov. 2-This treatment [chemoembolization of the left liver lobe] was a bit rougher and there were a few more complications but I am "done" (supposedly) until after Thanksgiving. I am quite concerned about what the next treatment will be. I have been told not to think about these things and focus on the here and now, but it is really hard to do. My typical day has two lows: the morning, when I first wake up and my body feels as if it has been through a thorough beating. and the evening, when everything is quiet and dark, and I am left to my wandering thoughts and self-pity. But, once I am up and have eaten my breakfast and taken my 9 or 10 pills, I begin to be progressively better as the day goes on. I am quite excited for Thanksgiving with my family. It will be the first time [most] of my siblings will have seen me post-treatment. I am a bit shocking to look at now. Nov. 23-I need to have hope, keep faith and believe God is with me always. I need . let myself be flooded by the enormous embrace of love from all those around me, and even around the country.Nov. 26 (first day of Hospice)-Living each day to its fullest potential, that is the goal. Sleeping, eating, exercising and engaging in merry fellowship is how I'll do this. I can do this with the will of God. Thanksgiving 2002-Last Sunday morning, I was taken up to RWJUH after waking with pains in my liver. The doctor informed my parents and me the tumors in my liver and lungs were growing. This was obviously a shock to us but what was revealed next was heart-shattering. I was given an expected time frame of six months to live.I believe in miracles and continue to have faith. I will not let six months be the definitive! I pray that each of you will continue to be positive and to live life to its fullest. Dec. 9-Dearest Friends and Family, as the Holiday season starts to take off, my health has turned somewhat sour. My nurse comes over more often, and eating, talking, listening, reading and writing are far more taxing than I ever imagined. I will try and remain as strong as I can for this holiday season as it signifies so much more to me this season than ever before.Thank you all for your love and support.I love you all so much! God bless you all! Dec. 10 (Christmas list)-I want something very sentimental, such as a necklace with "mother" in English on one side and "mother" in Korean on the other, just to let [Mom] know she has and always will be my one and only mother. Dec. 10-Death is not an evil at all, just a different blessing that requires a more positive frame of mindand good reminiscence.. Excerpted with permission from "Through Death to Life" by John Aeby in Hi Families Magazine (May/June 2003), published by Holt International Children's Service at www.holtintl.org. Editor's Note: The Hepatitis B Foundation sincerely extends its sympathies and gratitude to Helen Wise and her family for sharing Andrew's story with us. The loss of such a beautiful, articulate, and generous young man is heartbreaking for all who knew him One Man's Story A Daughter's PerspectiveCathy Pachuk, Ph.D.Associate Professor, The Jefferson Center, Thomas Jefferson University When my father was diagnosed with primary hepatocellular carcinoma (HCC), or liver cancer, about two years ago he looked to me for help in identifying treatment options. The diagnosis of HCC, difficult for anyone to handle, was extremely devastating to my father, who had already battled numerous life-threatening conditions and diseases. No Stepping Back from Set BacksIn February 1970, during a routine physical, a massive thoracic/abdominal aneurysm was found on my father's aorta. The odds of surviving surgery were very low and the odds of surviving without serious complications, such as paralysis, were even lower. The only surgeon willing to perform the surgery was the one who pioneered the development of this type of surgery, Dr. Michael DeBakey, of Methodist Hospital in Houston, TX. My father was one of the first patients to undergo this type of surgical procedure. The 12-hour operation was a success. Within three months, my father was back on the golf course. Due to complications from the aneurysm, however, one of my father's kidneys atrophied, leaving only one functional kidney. In addition, my father developed adult onset diabetes, congestive heart failure and an irregular heart beat that required insertion of a pacemaker. In 1992, my father was diagnosed with prostate cancer and treated successfully. Nine years later, the seemingly impossible happened: the cancer had metastasized and was now in his bones and spinal column. Currently, the cancer is being managed by hormone therapy. Through it all, my father has been a fighter. He has refused to feel sorry for himself, lose control or break down. He has faced every enemy head-on with a fierce determination to gain the upper hand. My father's philosophy has always been that life is meant to be lived. A Silent, Deadly InfectionThen one day, almost two years ago, my father was informed that he had liver cancer. Ironically, the same surgery that had saved his life 30 years earlier likely also resulted in his being infected with a deadly hepatitis virus. Silently working behind the scenes, the infection had finally taken its toll. My father had multiple liver tumors. He had about 6 months to live. For the first time, I heard the tiredness in my father's voice. He could only take so much. It wasn't fair. As soon as he surmounted one obstacle, another appeared in its place. But, despite it all, he wanted to lick this one, too, and so the hunt for a treatment began. Hunt for a TreatmentI spent the next few days speaking with hepatologists and scouring the internet for therapies, treatments and clinical trials. Unfortunately, I was learning that my father was ineligible for many standard treatments, including chemoembolization and surgery, due to his many health problems. His options were growing scarce and time was running out. Then I spoke with Dr. Jack Wands, director of the Division of Gastroenterology and The Liver Research Center Rhode Island and Miriam Hospital(s). He listened attentively to my story and asked if I had heard of Dr. Damian Dupuy at Rhode Island Hospital, who was doing incredible things with radiofrequency ablation (RFA) therapy, including treating liver cancer. New Therapy Extends Quality of LifeAs soon as I got off the phone, I fired off an e-mail to Dr. Dupuy. Within 24 hours I received a reply - he would be happy to evaluate my father, but cautioned that this treatment was not for everyone. Within a few weeks, my father underwent several tests and was then on his way to Rhode Island for treatment. Dr. Dupuy was able to ablate most of the tumor masses and two months later, my father was back on the golf course. That was eighteen months ago. Since that time, my father has needed two more RFA treatments. With every treatment, my father has recovered more rapidly. He is currently is leading an active life with my mother, spending time with his grandkids, and of course playing golf. We know that the cancer is not gone, but we will control it with ablation therapy for as long as possible. This treatment has not only extended his life; it has allowed him to live it doing the things he most enjoys doing. Editor's Note: The Hepatitis B Foundation sincerely thanks the Pachuk family for graciously sharing their story so that other families can learn from their experience. It is vital that individuals and families be aware that liver cancer can occur in those chronically infected with hepatitis B. Please feel free to email the Hepatitis B Foundation at info@hepb.org or call 215-489-4900 for more information about hepatitis B and liver cancer. A Doctor's PerspectiveDamian Dupuy, M.D.Associate Professor, Department of Diagnostic Imaging at Brown Medical School, and Director of Ultrasound at Rhode Island Hospital In addition to complete tumor eradication, radiofrequency ablation (RFA) can be used to control primary liver cancer in patients with no alternative options due to tumor size, tumor location or associated medical conditions. The daughter of one such patient who greatly benefited from the palliative effects of RFA has written her account of his story. With the patient's permission, I would like to share his case from the physician's perspective. First ImpressionsMr. Pachuk presented to me with two large hepatocellular carcinomas (>7cm) in the right lobe of his liver approximately 18 months ago. Standard therapy for his disease would have been surgical removal of the right side of his liver. Mr. Pachuk's normal left lobe was sufficiently healthy enough to carry the work load. Unfortunately, Mr. Pachuk had a history of congestive heart failure and chronic renal insufficiency making him a very poor surgical candidate. Despite his medical problems, Mr. Pachuk lives a full life enjoying travel and golf and he is not ready to throw in the towel just yet. His local physicians as well as specialists at a major cancer center were not aware of the benefits of RFA as a minimally invasive treatment option in cases such as his and he was given no treatment as his only option. This left him with a typical median survival of 4-6 months. Fortunately, his daughter works in the field of hepatology and her connections led her to me at Brown Medical School and Rhode Island Hospital where I had been using RFA as a palliative treatment option in patients with large liver tumors such as Mr. Pachuk's. Overcoming Medical ComplicationsThe first ultrasound-guided RFA treatment went very well, but I knew upfront that complete tumor eradication was out of the question; nonetheless, I did my best and approximately 80-90% of the tumor was killed. Normally, I follow patients with contrast-enhanced computed tomography (CT) or magnetic resonance imaging (MRI), but in Mr. Pachuk's case his renal insufficiency precluded use of intravenous CT contrast due to its toxic effects on the kidney. Compounding this management dilemma, Mr. Pachuk developed a cardiac arrhythmia requiring a permanent pacemaker. This now prevented him from being followed with MRI since the magnetic fields interfere with pacemaker function. Fortunately, Mr. Pachuk's tumor made a protein, which approximately 50% of primary liver tumors make, called alpha fetoprotein (AFP). Therefore, I have been following Mr. Pachuk's disease status with the AFP blood test. He has had two additional RFA treatments using CT guidance, whereby his tumor has been retreated to keep it from growing into the vital part of his liver where the major blood vessels and bile ducts are located. Walking the fine line between killing enough tumor without hurting the overall health status of Mr. Pachuk has been challenging enough, but compounding the inability to clearly see the areas of viable tumor has made it even more challenging. A Physician's RewardDespite the complexities of his disease and overall health status, Mr. Pachuk continues to live a normal life probably more active than most people in their 80's. This desire to live life to its fullest is most refreshing and as a physician, I find it very rewarding to be able to apply state-of-the-art technology in a clinical situation where no other hope exists. I thank Mr. Pachuk and his family for their bravery and open-mindedness during the course of his RFA treatment. I will continue to do my best at keeping his quality and quantity of life the main goal of therapy. Hopefully, those who hear this story may share this knowledge so that others in similar situations may benefit from this truly remarkable treatment option. About Radiofrequency AblationFor decades, direct injection of absolute ethanol had been used to treat small primary liver cancers with success rivaling surgery. Recently, radiofrequency ablation (RFA) a heat-mediated therapy has replaced alcohol due to its ability to treat larger lesions with fewer treatments. RFA is a technique whereby an alternating current in the frequency of radio waves is emitted from the tip of an electrode or needle placed directly into a tumor. The alternating current flowing back and forth through the tissue causes frictional heating and coagulation of tumor. For the treatment of primary liver cancer, RFA has achieved complete cell death in over 85-90% of cases in lesions smaller than 5 cm, with less than a 10% local recurrence rate. Unlike surgery and many other treatments, RFA can be performed many times in the same patient. This is very important in the hepatitis B population because these patients are prone to develop tumors in more than one site in the liver over time. The RFA procedure is a very safe and non-toxic treatment. The procedure is almost exclusively performed on an outpatient basis with the administration of intravenous medication to alleviate pain during the procedure. After the procedure, patients are given a small bandage and sent home with narcotics for a few days to reduce discomfort at the treatment site. Until modern medicine can prevent the formation or stop the growth of primary liver cancer at the gene level, focal ablative therapies such as RFA will be mainstays in the treatment of primary liver cancer for years to come. Tragic End for Young American Asian Doctorwith Hepatitis BBy Joel P. Engardio From our table at a sidewalk cafe in August 2000, my partner Mark and I took turns pointing out things that made us smile. Our mood was sublime, like the day, as we headed to an open-air jazz festival. Until a sharp stomach pain made Mark wince and double over. Was it the ulcer he feared? At 30, Mark Lim was a young doctor saddled with debt and the challenge of building a career after eight sleepless years of medical school and training. Mark didn't have an ulcer. An ultrasound of his abdomen showed an ominously patchy liver. A biopsy confirmed the worst: cancer. His liver was riddled with so many out-of-control cancerous lesions that neither surgery nor transplant was possible. Chemotherapy would only slow his inevitable, insufferable demise 14 months later. But the question remained, how did such an otherwise perfectly healthy young man, who had a gym-toned body and never drank, end up with the organ of a hard-living alcoholic twice his age? The answer was chronic hepatitis B, a virus that can silently harbor in a healthy liver for decades before unleashing its destructive power. Mark knew about his hepatitis. He discovered it from blood tests required by his medical internship. But experts at the prestigious Midwestern hospital where Mark did his residency told the 26-year-old not to worry. He was a "healthy" carrier, they said. His symptom-free kind of hepatitis wouldn't have to be monitored for liver cancer until he was in his 50s or 60s. Good advice, if Mark were not an Asian man. Had he or his doctors been trained to know that Asians are at accelerated risk because they are typically infected as children, he would have immediately gotten regular ultrasounds and blood tests to catch the cancer that killed him at 31. Liver cancer is rampant in Asia. The main culprit is chronic hepatitis B, a virus transmitted by blood or semen. Exposure to it at childbirth is the real problem, because that's when the risk of chronic or lifelong infection is greatest. Since it can take 30 years to manifest, all adult children of Asian immigrants -- even those born in the United States -- are at risk. Before Mark died last October, he became a spokesperson for the Jade Ribbon Campaign, urging all Asians to check their hepatitis status. As a doctor -- and a victim -- Mark felt it was his duty to speak up about what has become the greatest health disparity between Asians and Caucasians. He was moved not only to fight the disease that was killing him, but to wipe out the ignorance that had allowed the problem to get so out of hand. Jade Ribbon is just one voice trying to sound the alarm of a health crisis to come. Confronting his own mortality wasn't easy for him. "It's scary to think of your life in months, instead of years," he told me as his death approached, our dreams of that day at the sidewalk cafe shattered. His life was so short, and his death so horrible. Mark was dedicated to saving lives as a doctor. He can't do that anymore, but his story can. In the end, the most he could do was hope his words might inspire his medical colleagues to offer -- and his Asian peers to seek -- the information that can save thousands like him from his fate. If only they listen. Excerpted from articles by Joel Engardio that were originally printed in the San Francisco Weekly 5/1/02 and San Francisco Chronicle 1/3/03. Editor's Note: The Hepatitis B Foundation thanks Joel Engardio for graciously sharing his story so that others can learn from Mark Lim's tragic death: it is important that those who may be at high risk for hepatitis B are tested as soon as possible. Re-testing may be necessary. Be sure to ask for copies of all hepatitis B blood tests and confirm the results with your doctor. Running was Adrian Elkin's passion. As the youngest of five children, Adrian grew up running, trying to catch up with his older brothers and sisters. In high school, he discovered cross-country running and continued running after he went to college. During Adrian's sophomore year at Southern Oregon University, he was unexpectedly diagnosed with liver cancer due to chronic hepatitis B. This became his toughest race ever. Adrian courageously underwent months of surgery, chemotherapy, and related treatments to beat the cancer. During the last two months of his life, he devoted his time to organizing a race to raise awareness about liver cancer and hepatitis B. Adrian and his family started work on the first Answer to Cancer Race in June 2003, racing against time. In six incredible weeks, they were ready. On August 3, the day of the race, he fired the starter's pistol and the runners were off. Eight days later, Adrian Elkins died at the age of 20 years old. Adrian began life as an abandoned baby at a Calcutta orphanage. At three months, he was adopted by the Elkins family from McMinnville, Oregon. "He was the perfect little boy," his mother Judy recalled, and "we doted on him." Although he appeared healthy, Adrian and his parents always knew he was a carrier of hepatitis B due to a blood transfusion he received as a premature infant in India. However, they never expected the disease to manifest itself as a rare type of liver cancer called hepatocellular carcinoma (HCC). "Doctors said he was at little risk of problems because of the hepatitis B," his mother said. Judy Elkins now wishes that they had been on the lookout for cancer, with regular screening and specialized medical care. But the possibility seemed so remote. "We heard what we wanted to hear," she said. "Now we know more than we wish we had to know." On the first day of his sophomore year in college - Sept. 30, 2002 - Adrian awoke feeling funny. In retrospect, he realized that he had felt tired all summer. He had attributed his symptoms to his busy schedule of working and training for a major relay. As he returned to his dorm room after breakfast, he began having a lot of pain and difficulty breathing. A friend drove him to the hospital emergency room, and at first, physicians thought Adrian was having a gallbladder attack. Then, an ultrasound test revealed that his liver was extremely enlarged. A liver biopsy was done. Days later, the family learned that Adrian had hepatocellular carcinoma, or liver cancer. It was devastating news. Still, there was hope. Adrian was an excellent candidate for surgery to remove the cancer, since it appeared to involve only the right lobe of his liver. He started his first round of chemotherapy while waiting for surgery. Sadly, the operation brought more bad news. The cancer wasn't confined to the right lobe after all - the left lobe was affected, too. Worse, the cancer had also spread to his lungs. Adrian battled his disease for ten months. Adrian's legacy is a gift to generations of patients in their fight against liver cancer. Thanks to the generous support of many, the Answer to Cancer Race 2003 raised $24,000 for three charities dedicated to liver cancer. Adrian's final gift is the Answer to Cancer Race that will help generations of patients in their fight against liver cancer. He turned his passion for running into a legacy of caring that will endure. Editor's Note: We thank the Elkins family for sharing their story with the Hepatitis B Foundation and extend our admiration for Adrian's commitment and dedication to educating the public about liver cancer and hepatitis B. This article was excerpted from their emails and press releases on their Answer to Cancer Foundation at www.answertocancer.org. One Woman’s Life with Chronic Hepatitis B Brings Hope to Others At first glance Sheree’s life appears plagued by illness and the loss of a much-loved hospital nursing career. Despite the challenges imposed by living with chronic hepatitis B, however, Sheree has endured and reinvented herself with the help of technology and a love of helping others. Sheree lives in the rolling green hills of southern Ohio as generations of her family before her. She has penetrating green eyes and speaks with a gentle Appalachian accent. Neither she nor her family members fit the profile of someone who might be at risk for hepatitis B. In 1981, at age 26, Sheree began experiencing nausea, fatigue and abdominal pain. “I kept wondering why I was so darned tired. Was it because I had been working at least two to three double shifts a week and had a young child? I was young, I shouldn't have been so tired,” she recalled. Soon she could tolerate only burnt toast, oatmeal, and water. “I diagnosed myself as having gall bladder problems and went to a surgeon to have it removed,” she said. “I was surprised to wake up in the hospital’s isolation ward, which meant no one could come in without protective gowns and gloves. I thought, what is going on? Surgery patients aren’t isolated.” The doctor told her she had “some kind of hepatitis.” Further tests revealed that not only did she have chronic hepatitis B, but she was also suffering liver damage from the virus. “I remember thinking, ‘Oh my God, what now? How did I get it? What about my son and husband?” Fortunately, test results showed that neither her son nor husband was infected. Sheree had worked as a nurse and assumed she had become infected through exposure to infectious blood or body fluids from a jaundiced patient she had cared for. She eventually returned to work, but in the months that followed, suffered relapses and frequent hospitalizations due to fatigue and abdominal pain related to hepatitis B. At age 26, Sheree found she couldn’t sustain the workload of caring for both patients and family.She became pregnant with twins four years after her diagnosis and her obstetrician recommended an abortion because of her hepatitis B infection. “I just couldn’t believe his advice,” she recalled. Sheree’s nursing experience and outrage/disbelief/anger kicked in and she set out to find an infectious disease doctor who could answer her questions about the risk her hepatitis B posed to her unborn children. “Thank God I found a specialist who reassured both my doctor and me that the twins could vaccinated at birth so they would be protected from the hepatitis B virus,” she recalled. “I found an excellent pediatrician who prepared everything in advance. When my C-section was scheduled, the hepatitis B vaccine was ready and my boys were immunized immediately to prevent infection.” As years passed, Sheree continued to suffer disabling fatigue and relapses from her hepatitis B. As a result, she kept trying to learn more about hepatitis B. In 1997, she met Steve Bingham and John Kirk through an email list designed for patients with hepatitis B or C. “I probably stood out because I kept asking questions about hepatitis B that no one could answer,” she recalled. In 1998, Sheree became a co-host of a new email list - the Hepatitis B Information and Support List (hblist.net) – which remains the only online support group for people living with chronic hepatitis B.She also created a comprehensive online “Hepatitis B Research Archive” of medical and general news articles on hepatitis B. “I guess it’s the nurse that’s still in me. I love helping others and doing research. Answering people online and posting the latest medical information on my research website is one way I can help them,” Sheree said. In 1999, Sheree’s family suffered another enormous blow. Her younger brother was diagnosed with hepatitis B just a few weeks before he died suddenly and tragically of liver cancer. After his death, everyone in the family was tested. It turned out that several of Sheree’s immediate and extended family members were also found to be chronically infected with hepatitis B. Her experience as the HB-List’s “Mom” was extremely useful as Sheree helped guide her family through the complexities of understanding hepatitis B, the tests, the management issues and treatment options. Sheree’s active involvement with the online HB-List and Research Archive revitalized her nursing skills and utilizes her compassionate and personal understanding of the issues faced by people living with hepatitis B. Her email messages, signed “Hugs, Sheree,” confer a kind reassurance to everyone. You can almost hear her maternal “clucking” as she reassures list members that their hopes and dreams can remain intact, despite their chronic infection. While Sheree has ultimately achieved a non-traditional nursing career that utilizes her medical expertise and research talents, her chronic hepatitis B infection continues to cause liver damage (she has mild cirrhosis) and an unusual amount of pain, which are constant. “There are days when I think, ‘why do I have to go through this?’” she admitted. “But most of the time, I try not to dwell on it. These are the cards that I’ve been dealt and I have to play my best hand with them.” *Since this story was originally written, Sheree lost her battle with chronic liver disease. Successful Treatment of a Child Living with Chronic Hepatitis B When Helen Kane and her husband adopted their daughter in China, they knew nothing about hepatitis B. They certainly never imagined that their beautiful new baby could have hepatitis B. And they had no idea that their future would be filled with hospital visits, blood tests, and a paralyzing fear of losing their child to this unknown liver infection. Among the most difficult challenges they would ultimately face was whether to treat their child with a potent drug called interferon that required three painful injections each week and promised a lackluster 30 percent chance of success. This was a decision the Kanes, a middle-class professional couple who live outside Washington D.C., never thought they’d be making when they adopted 10-month-old Morgan. In China, their daughter had tested negative for hepatitis B, so the couple assumed she would be free of the virus that has infected 60 percent of the Chinese population and chronically infects 10 percent. Shortly after they returned home, Morgan was retested for hepatitis B, as recommended for all international adoptees. A week later, a nurse called with the results. “I remember that call clearly,” Helen said. “I was at an outdoor restaurant having a cup of coffee with Morgan in her stroller when my cell phone rang. The nurse told me Morgan had a ‘touch’ of hepatitis. I got off of the phone and started crying. I called my husband, but it was too difficult to explain to him over the phone.” With that phone call, the family’s life was turned upside down. “In the beginning, we were absolutely devastated,” Helen recalled. Tests indicated that Morgan had a high viral load (a lot of virus in her bloodstream) and that the infection was already causing significant damage to her liver. “Of course I had no idea then what the test results meant, or the significance of the various hepatitis B antigens and antibodies.” The Kanes took Morgan to a pediatric gastroenterologist to the Johns Hopkins Medical Center. “I can still remember asking our doctor why we should treat Morgan, given the low chance of success and the difficulty of treatment,” Helen recalled. “Her reply was, ‘because you have to try anything you can to prevent her from ever needing a liver transplant.’ Her statement truly had a profound effect on our decision. We decided that even though the odds were low, we had to try.” Four months after arriving from China, Morgan underwent her first liver biopsy. This is a procedure that involves removing a small sample of liver tissue with a surgical needle. “One of the most difficult things to do was to sit with Morgan for nine hours while depriving her of food before the procedure,” Helen said. “She went from being a happy baby, to a quiet, withdrawn baby wondering why we wouldn’t feed her.” “I’ll never forget carrying my little one into the operating room and trying to soothe her as they placed the mask over her face,” she continued. “Later, we could hear her screaming as we entered the recovery room. She was so angry with us! It was difficult trying to comfort a terrified baby when she has a board strapped to her hand and an IV hooked to it.” That night at the hospital, Morgan received her first interferon injection. Later at home, the Kanes began to administer the injections three times a week. They designated a guest room that Morgan rarely played in as the “shot” room. “We would have everything ready for her so all we did was quickly give her the shot and then immediately calm her by placing her in a warm bath following the injection,” Helen recalled. Morgan also underwent bi-weekly blood tests to monitor her response to treatment. “The interferon shots were tolerable, but the blood tests were very hard on her. Morgan could sense when it was time for a blood draw and became withdrawn. When she began to talk, I remember the pain I felt when I told her we were going to get her blood drawn and she screamed back, ‘No! No blood!’ When the words came out of her mouth, I was so taken aback,” Helen said. As with most children who receive interferon for chronic hepatitis B infections, Morgan had few side effects from the drug. “She did experience some muscle and joint pain, and she was certainly more fatigued than the average child, but as a baby she had the luxury of sleeping, as opposed to adults who must resume work,” Helen said. Despite the difficult treatment, Morgan’s personality blossomed. She was a cheerful and resilient patient with an outgoing personality. She quickly became a favorite among clinic staff. Unfortunately, six months of interferon did not reduce Morgan’s high viral load or liver damage. “I remember talking with another mother whose daughter was also not responding to interferon treatment,” Helen recalled. “She told me she had finally accepted that her family would always be living with hepatitis B. Her statement was a wake-up call to me. It was the first time I realized we might be living with Morgan’s hepatitis for the rest of her life and I began to actively research hepatitis B on my own.” Since interferon did not work, Morgan’s doctor recommended trying the oral antiviral drug called lamivudine (Epivir-HBV), which at the time had not yet been approved for children (it was approved for adults in 2002, and shortly afterwards for children). At age 2 1⁄2 years, Morgan required a second liver biopsy before starting one year of lamivudine treatment. After nine months on lamivudine, Morgan began to respond to the drug and her viral load decreased to undetectable levels in the bloodstream, which meant there was a lot less virus attacking her liver. Current drug treatments such as interferon or lamivudine rarely result in a “complete cure”, which is achieved only when the immune system gets entirely rid of the virus and then develops protective antibodies against future exposure to the virus. For Morgan, though, after a full year of lamivudine treatment, she tested negative for the hepatitis B virus. By Christmas, Morgan tested positive for the protective antibodies – she had experienced a complete cure from a chronic hepatitis B infection. “It was the best Christmas present we could have ever received,” Helen said with tears in her eyes. It has been three years since Morgan cleared the hepatitis B infection. Today, she is a bubbly, seven-year old with no signs of liver damage. “It’s funny, we never did ‘celebrate’ like you might think we would when Morgan cleared the infection,” Helen explained. “We are still almost afraid to talk about it, as if it would tempt fate. We know Morgan will always be at higher risk for liver disease than someone who has never been infected. But we couldn’t be happier with her successful treatment.” Breaking the Cycle of Hepatitis B Infections from Mother-to-Child Michelle is one of 1.25 million Americans who live with chronic hepatitis B. Michelle was born in 1969 to an American father and Vietnamese mother, who had met and married during the Vietnam War. She grew up healthy and happy in Kentucky, unaware that her mother had unknowingly passed on the hepatitis B virus to her at birth. When Michelle was born, there was no hepatitis B vaccine available to prevent this infection. Had she been immunized within 12 hours of birth, she would be free of infection today. “I found out about my infection through a routine blood test during my first pregnancy in 2000,” Michelle said. Kentucky is one of the few states in the country that require pregnant women to be screened for hepatitis B. “The nurse called me at home to tell me my hepatitis B test had come back positive. I immediately thought it was a lab error.” “Eight years earlier, I had donated blood and was told that I had hepatitis B. I was re-tested and they told me I had never been exposed to hepatitis B and was free of infection,” she recalled.But after the hepatitis B test came back positive during her pregnancy, Michelle went to see a specialist for more tests. This time, he confirmed she had chronic hepatitis B. Most teens and adults infected with the hepatitis B virus experience only a brief or acute infection. However, when newborns like Michelle are infected, they face a 90 percent risk of developing a chronic or life-long hepatitis B infection. “Needless to say, after my diagnosis I experienced the emotional succession of denial, depression and then acceptance of my hepatitis B infection,” she said. Her immediate concern was to make sure her newborn daughter would not be infected with hepatitis B. “During my delivery, I made sure the hospital staff was aware of my hepatitis B, and I constantly reminded them to make sure my baby received the hepatitis B vaccine within 12 hours of her birth, which prevents mother-to-child infection 90 percent of the time. Fortunately, the hospital staff was on top of things and my daughter was vaccinated properly and today is free of hepatitis B.” Michelle’s husband also tested negative for hepatitis B after her diagnosis and was quickly vaccinated. After much pressuring, Michelle had her parents tested for hepatitis B. “When my mom asked her doctor to test her for hepatitis B, her doctor asked ‘Why?’ He saw no reason to test her, even though Asian-Americans are at extremely high risk of hepatitis B.” Her mother’s hepatitis B test came back positive. Later that year, Michelle found out that her maternal grandmother, who lives in the United States, also tested positive for hepatitis B. “After this revelation, our family history came pouring out,” Michelle explained. “I learned that another of my mom's sisters also has hepatitis B, as do other family members. Vietnam, like other countries in Asia, has very high rates of chronic hepatitis B infection, which is why one in eight Vietnamese-Americans has chronic hepatitis B. Hepatitis B is the second-leading cause of cancer death in Vietnamese-American men because it is often not diagnosed or treated until serious liver disease has occurred.” Today, Michelle has a second child, who was also promptly vaccinated at birth and remains free of hepatitis B. “Knowing that both my children were properly immunized against hepatitis B at birth gave me great confidence that they would be free of hepatitis B,” said Michelle. “Sadly though, this means that only my children’s branch of my family tree will be free of hepatitis B. I wish I could say the same for the rest.” One Man’s Personal Quest for a Cure Rodolfo is a pioneer. In his journey to find a cure for his chronic hepatitis B infection, he has chosen the path less traveled at almost every step of the way. Today, he practices meditation and yoga to strengthen his body on a daily basis. He takes an oral antiviral drug called tenofovir (Viread), which has not yet been approved for hepatitis B treatment by the U.S. Food and Drug Administration (FDA). Recently, at age 42 years, Rodolfo participated in a highly experimental stem cell treatment available only in Europe. Rodolfo’s non-traditional pursuit of a cure is fueled by a fierce drive to recover the health and energy he had before suffering from acute hepatitis B five years ago, when he was living in New York City. The liver infection initially devastated him physically and emotionally. “I was trying to launch a theater career and loving the high energy of New York City,” he recalled, “and then hepatitis B hit me like a ton of bricks.” Suddenly, he was exhausted and aching all the time. A simple blood test showed that he had acute hepatitis B. Follow-up tests showed that the virus was not going away, and he was then diagnosed as having chronic hepatitis B more than six months later. Rodolfo’s doctor wanted to perform a liver biopsy to see whether he had any liver damage and whether he would be a good candidate for treatment. “I avoided getting a liver biopsy for almost a year because I was in denial, I didn’t want to face the fact that my life would be permanently changed by this,” Rodolfo said. Finally he relented and underwent a needle liver biopsy, which is a procedure that involves the removal of a small sample of liver tissue for examination. The biopsy revealed cirrhosis – serious scarring of the liver. Rodolfo returned to his hometown of Miami and to the embrace of his close knit Cuban-American family as he attempted to reassemble his life. During this time, however, he refused to accept that the fatigue, pain and liver damage caused by his chronic hepatitis B infection was something he couldn’t beat. “My symptoms are the reason why I am willing to be so experimental in pursuing treatment,” he said quietly. “And the fact that I may be advancing research that could lead to a successful hepatitis B treatment is simply so satisfying that it enriches my life,” he added. Initially, his doctor recommended treatment with the oral antiviral drug called lamivudine (Epivir-HBV). But Rodolfo viewed it “as a palliative, a drug I would have to be on it for the rest of my life.” He wanted a treatment that had the potential to produce a cure, regenerate his liver and return the energy he had before being struck down with hepatitis B. Although Rodolfo decided to try lamivudine, after one year of treatment his viral load rebounded due to drug resistance – that is, the virus stopped responding to the drug and started reproducing actively again. From this disappointing result, he started doing extensive research on his own and learned about tenofovir, an antiviral drug that has been FDA-approved to treat HIV, but also appears to be quite effective against hepatitis B. While tenofovir has not yet been approved for hepatitis B, Rodolfo found a liver specialist who was willing to prescribe it “off-label” since the drug is in phase III clinical trials for hepatitis B. For the past three years his viral load has dipped to undetectable levels and his liver damage has subsided. But Rodolfo was still in quest of a complete cure and maintained an active “hope file,” where he compiled news of experimental treatments that might some day vanquish the virus and regenerate his embattled liver. “I have a fighter spirit in me,” he admitted with a shy smile. “I don’t just settle for what is available.” He didn’t want to assume that tenofovir would always be able to keep the hepatitis B virus in check. He read about a doctor in England who was conducting experiments that used stem cells to regenerate the liver. According to the research literature, human embryonic stem cells have the potential to develop into many different cell types in the body. Serving as a sort of cellular repair system, they can continuously subdivide and their “offspring” cells have the potential to become another type of cell, such as liver cells that could potentially repair a liver that has been scarred or damaged by chronic hepatitis B. Stem cell research has been limited by politics in the United States, despite early successes in Europe and Asia, because stem cells can be obtained from aborted embryos, as well as cloned or cultivated from a patient’s own white cells. “The minute I read about an experimental trial using stems cells to regenerate the liver, I decided I had to get into it,” Rodolfo said, “this could be a possible cure for chronic hepatitis B.” He emailed the London researchers and in early 2005 was one of five people accepted into the trial. “They used my white blood cells to cultivate about one million stem cells, which they infused into my portal vein. It is hoped that the stem cells will multiply in my liver, take on the characteristics of healthy liver cells, and proceed to repair and regenerate it,” he explained. In London, the doctors drew blood from one of his arms, removed the white blood cells, and then pumped the blood back into him through his other arm. “You feel quite weak during the process,” he said. The major risk of the treatment was a side effect from a drug used to boost the body’s ability to create stem cells from white blood cells. It could cause a rupture in the spleen if too many stem cells were produced. Since undergoing the highly experimental stem cell treatment, Rodolfo has experienced no ill effects from the treatment. It will be several months before researchers can tell if the transplanted stem cells were successful in generating new, healthy liver tissue. In the meantime, Rodolfo has returned home to Miami and is recovering from the procedure. He admits it is sometimes hard to be a “medical guinea pig”. “Family members told me I was out of my mind to try this, and my dad was very anxious, but it is very important to me to find an effective treatment for myself and for others who live every day with the debilitating effects of chronic hepatitis B,” he said. “There has to be a way to beat this infection. And I’m determined to find it.” Note: Description of stem cells comes from NIH (http://stemcells.nih.gov/info/faqs.asp#whatare)

  https://www.hepb.org/research-and-programs/patient-story-telling-project/patient-stories/