Hep B Blog

Category Archives: Living with Hepatitis B

Action Alert! Urge Members of Congress to Include Viral Hepatitis Funding in Programmatic Requests

If you read Hepbtalk’s blog last week summarizing the Viral Hepatitis Policy Summit, you know that it will take efforts from all advocacy organizations and people like YOU telling your story and asking that money be dedicated to viral hepatitis. Please get involved. We need YOUR help!

 

On February 13, 2012, President Obama kicked off the Fiscal Year 2013 appropriations process with the release of his budget proposal.  The President’s FY2013 budget flat funds the Centers for Disease Control and Prevention (CDC) Division of Viral Hepatitis (DVH) at the total funding level of FY2012 – including the $10 million from the Prevention and Public Health Fund.  We need your help in raising awareness among Members of Congress about viral hepatitis and asking their support for increased funding for viral hepatitis activities at the federal level.  Viral hepatitis advocates are urging for protection of the President’s request and an increase to $59.8 million for DVH, which is $30.1 million more than the current funding level of $29.7 million.

In the next 2-3 weeks, all Senators and Representatives will write their “programmatic appropriations request letters,” which ask members of the Appropriations Subcommittees (who put together the federal funding legislation) to include funding for their priorities. The more Members of Congress that include a request for hepatitis funding in their letters, the greater the likelihood the Appropriators will include additional funding in FY2013.

Viral hepatitis impacts over 5.3 million people nationwide. With a lack of a comprehensive surveillance system, these estimates are likely only the tip of the iceberg and 75% of those infected do not know their status. Even with these daunting figures, there are only $29.7 million in federal funding dedicated to fund viral hepatitis activities nationwide at the CDC.  Members of Congress need to know that viral hepatitis is a concern in their district, that their constituents are being affected and that this is an issue they need to care about. We need you to tell your story and ask your elected representatives to take action by March 20.

Step-by-step instructions on what to do are below:

  1.  Determine what Members of Congress to contact.  You should contact your personal Member of the House of Representatives and two Senators.  You should also contact other House Members in areas where your organization is located or provides services.  To determine who your Representative is please go to www.house.gov and type in your zip code(s); to determine who your Senators are go to www.senate.gov and select your state from the drop down menu.
  2.  Call the Members’ Offices to get the name and correct spelling of their health staff person.  Email the staff using the draft email text below.  House staff emails are First.Last@mail.house.gov (john.smith@mail.house.gov) Senate staff emails are First_Last@Last name of Senator.Senate.gov (john_smith@doe.senate.gov)

Sample email:

Your Name

State and Zip code

Dear (Name of Health Staffer):

My name is ____________ and I live in City/State. I am writing to urge Representative/Senator________________ to include funding for viral hepatitis in his/her Fiscal Year 2012 programmatic appropriations request letter.  [Include brief details on the impact of viral hepatitis on yourself or describe your organization].

There are over 5.3 million Americans impacted by viral hepatitis but the only dedicated federal funding stream provides a mere $29.8 million through CDC.  This is insufficient to provide the most basic public health services such as education, counseling, testing, or medical management for people living with or at risk of viral hepatitis.

I urge Representative/Senator ___________ to support the President’s budget request of $29.8 million for FY2013 and increase the request to a total of $59.8 million for the Division of Viral Hepatitis to effectively combat these epidemics.  I will be following up with you in the near future to discuss this request.  In the meantime, feel free to contact me with questions.

Thank you again for consideration of my request.

Your Name

  1. Follow-up with the staff you have emailed with a phone call to confirm they received the request and to determine when they may have an answer from their bosses as to whether or not they will include a hepatitis funding request in their Appropriation programmatic request letter.  If asked, make it clear to the staff that this is a program request and NOT a project request (i.e. money for a district specific project like a bridge, hospital or university).  You may need to follow-up again around the time the staff says they will have an answer from their chain of command.
  2. If you need assistance or want to talk through the process please email or call Oscar Mairena at (202) 434-8058 or omairena@NASTAD.org. If the staff member requests “report language” or “program language,” please contact Oscar and he will provide that for you. Please also share positive responses with the Hepatitis Appropriations Partnership by contacting Oscar.

Oscar Mairena

Senior Associate, Viral Hepatitis/Policy and Legislative Affairs

National Alliance of State & Territorial AIDS Directors (NASTAD)

444 North Capitol Street NW, Suite 339

Washington, DC  20001

Phone: (202) 434.8058      Fax: (202) 434.8092

omairena@NASTAD.org     www.NASTAD.org

“Bridging Science, Policy, and Public Health”

 

HBV Employee Screening By Suppliers of Your Favorite Apple Gadgets -Tip of the Iceberg, But Commendable

Apple recently revealed a list of its suppliers of the iphone, ipad and other gadgets, and the labor, health and health and environmental violations against some of the offenders. Most of these violations were out of Taiwan and China.  Included in the list of violations was the screening of employees for hepatitis B. What will this disclosure mean to those living with hepatitis B in China and around the world?  Apple has responded to each of the violations that were uncovered and says it will end relationships with repeat offenders. Will this stop discrimination against those living with HBV? Probably not, but it may stir-the-pot, encouraging other corporations to do the same.  Apple has star power, and the ability to make waves due to their success and reputation.  However, it is likely that foreign suppliers will circumvent the system and continue screening its employees or prospective employees for hepatitis B.

The question is how a job making gadgets, or components for gadgets, for Apple or any other company could possibly pose a reasonable risk of HBV exposure to any factory employee?  Hepatitis B is not transmitted casually. It is not transmitted by sneezing, coughing, shaking hands, sharing a meal, or working side-by-side with someone on the factory floor or sharing an office with someone who has hepatitis B.  HBV is transmitted through  blood and infected body fluids through blood to blood contact, unprotected sex, unsterilized needles and from an HBV infected mother to her newborn during delivery.

Every day the Hepatitis B Foundation responds to inquiries from people around the globe. Due to the stigma associated with HBV, chronic carriers may be denied employment due only to their HBsAg positive status.  There are special circumstances where exposure prone procedures may put others at risk due to an HBV infection. This would be limited to health care positions that involve invasive procedures such as gynecologic, cardio-thoracic or surgical procedures that might put a patient at risk. These risk-prone occupations do not include – other health care positions, jobs in the food industry, the retail industry, being in an office, in a factory, on cruise line, or any number of ordinary jobs. A positive HBsAg test should not prohibit employment, or entering and working in another country.

There will always be discrimination in our world. Even with laws that protect employees in the U.S. there are ways to circumvent the system and quietly discriminate. In many countries where HBV is prevalent, discrimination is blatant.  And of course HBV screening is merely the tip of the iceberg with the violations and deplorable working conditions in countries like China. Eyes wide-open can be a little disconcerting for those of us with our favorite gadgets. Apple’s disclosure of these violations is commendable and a start in the right direction.  Hopefully other companies will step-up and follow their lead.

China Approves Hepatitis E Vaccine – What that means if you have HBV

It was an interesting couple of weeks for viral hepatitis vaccines.  A potential vaccine for Hepatitis C appears to be on the horizon, and China announced it has approved a vaccine for use for hepatitis E virus (HEV).

What does this mean if you have hepatitis B?  I’m not sure. If you are living with HBV, it is clear that it is best to avoid coinfection with another hepatitis virus or infectious agent.  Coinfection will likely hasten liver disease progression and increase the risk for liver cancer.  At this time, the hepatitis A vaccine is recommended for those who are infected with HBV in order to avoid additional stress to the liver. Please keep in mind that the mode of transmission is the same for HBV and HCV, but is different for HAV and HEV.  It’s important to keep your viral hepatitis ABC’s straight!

Hepatitis E is a self-limiting disease, which is shed in the feces and transmitted via contaminated water and food – very much like HAV.  Although HEV is an acute infection like hepatitis A (HAV), it has about a 3% overall mortality rate and a much higher rate among pregnant women, and solid organ transplant recipients. It predominantly affects those between the ages of 15 and 40 years. HEV is endemic in Central and South-East Asia,  North and West Africa, Mexico and developing nations where there may not be access to clean water and proper sanitation and hygiene.  At this time, it is not prevalent in the U.S., but we are a traveling nation, and it’s something to think about when traveling abroad.

The HEV vaccine, developed by Xiamen University and Xiamen Innovax Biotech Co. Ltd. is a three-shot series : shot one followed one month later by shot 2, followed by shot 3 six-months after the third shot. The phase III trial results were found to be well tolerated and safe for the general adult population.  This would make the HEV vaccine a good choice for travelers in endemic areas who can receive adequate protection with a 2-shot series in one month.

However, these results for the phase III study were for the general population only and did not include children, adults over 65 years, pregnant women and those living with chronic liver diseases such as HBV or HCV.  If you are infected with HBV, it would make sense to be vaccinated against a virus that can cause additional harm to the liver, but at this time, additional research needs to be done ensuring the vaccine will benefit those living with hepatitis B or C.

Sheree Martin Retires from the Hepatitis B Information and Support List

After 13 Years, our Mammablondie has retired as a listowner of the Hepatitis B Information and Support List.  Sheree Martin has been List Mom to thousands of hepBers who have come to us from all over the world.  Like a true mother, she was quick to give hugs, the cyber kind, just when we needed them most.  And when we squabbled, she was there to call “time out”.

As for the “information” component of our list, Sheree has contributed more than anyone else.  She has spent countless hours scanning the Internet daily for HBV research and news.  The result of her efforts is our Hepatitis B Research List. For those wishing for information only, you can select send a blank email to HBV_Research-on@mail-list.com

For a number of years the PKIDS organization hired her to do the same thing for them, provide them with daily bulletins about kids’ infectious diseases. Sheree donated the money she earned to our listserv in order to cover miscellaneous  expenses.

In the beginning days of the List, John Kirk and I recognized immediately what a gem Sheree was, and we invited her to join us as a third listowner. She was smart, she was a nurse, she had IT skills, she was a good writer, and she knew how to referee when the two male egos would wrestle.

Sheree lives in the same small town where she grew up, on the edge of the Appalachian Mountains.  She’s proud of what she calls her hillbilly roots.

We all got to know and love Sheree’s mother, Yvonne, when she accompanied Sheree to the Hepatitis B Foundation’s patient conferences.  Not only did Yvonne have HBV, but in 1999, Sheree’s only sibling, Mike, died of liver cancer associated with HBV.  Fighting HBV was a very personal battle for Sheree.

We’ll need two people to fill Sheree’s shoes on the List.  Yvonne Drazic (Australia) will be our new listowner, and Christine Kukka (Maine) will take over the Research List.

At home in that picturesque country village, Sheree will have more time to do what she loves most–  being a mother to her 3 sons, 2 grandsons, 2 dachshunds, and 1 beagle.

We won’t lose our List Mom completely.  “I’ll still be around,” Sheree promises.  I’ll be lurking in the wings.”

A big hug to Sheree,

Steve Bingham, Retired List Dad

If you or someone you know is living with hepatitis B, we encourage you to join this HBV online forum filled with information, support and compassion!

Ringing in a Happy, Healthy 2012 For Those Living with HBV

Out with the old bad habits and in with the new, healthy habits. The New Year is upon us and for those of us living with HBV; it’s time to make a commitment to habits that support a healthy liver.  Let’s start with New Year’s Eve – A sip of champagne to ring in the New Year? Yes!  Half a magnum of champagne to ring in the New Year… dangerous!

Let’s face it. Drinking alcohol and HBV do NOT mix.  Years of HBV results in liver disease progression. Drinking alcohol to excess also causes liver disease progression. The rate and degree of liver disease progression is not necessarily predictable and may vary with the individual. However, mix hepatitis B and alcohol and you have a deadly combination leading to more advanced liver disease progression.  Make the commitment in 2012 to stop drinking alcohol.

Do you smoke?  Why?  The warnings regarding the risks of smoking never cease.  If you smoke and have HBV, you increase the rate of your liver disease progression and you significantly increase your risk of liver cancer. Once again it’s the combination of HBV and the bad habit that increases your risk of liver cancer even more.  Smoking is bad for you and HBV is bad for you.  Make a commitment in 2012 to stop smoking.

Fatty liver disease and diabetes are on the rise. ALT levels may be elevated by your HBV or by fatty liver disease.  You don’t want either, so do your best to avoid foods that increase your risk for diabetes or fatty liver disease. Take a hard look at your diet.  Do grab food on the go?  Do you shop on the inside of the grocery store or the outside?  Do the food items you buy contain a list of ingredients you cannot pronounce?  Go back to basics. Shop on the outside of the store where the fresh vegetables, fruits and other fresh foods reside.  Make your own meals rather than buying ready-made. There is no specific diet for those living with hepatitis B, but a healthy diet is important. Eat fresh, healthy vegetables, fruits and lean meats.  Avoid “white” pastas and breads, and eat whole grains.  Avoid high fructose corn syrup and refined sugar.  Read the labels on the backs of the packages to compare your intake of sugar and fat. You may be swapping one for the other, which might be important if you are watching your sugar intake. Eat health, monounsaturated fats like olive oil, avocados, and nuts.  Avoid saturated fats such as butter, fatty meats, etc.  Spend a little time learning the healthy-diet basics and gradually implement changes into your diet and lifestyle.

Exercise really is good for you, but sometimes it’s tough to get in the groove. Just because you have HBV does not mean you should avoid exercise.  Exercise as you are able.  You will find that moderate exercise will actually make you feel better rather than worse.  HBF’s Senior Medical Adviser advises those recovering from an acute HBV infection should avoid bed rest unless specifically prescribed by their doctor. Getting up and about actually helps your liver and the recovery process. This does not mean you need to be training for a marathon, but exercise in moderation is good.  So find yourself an exercise partner, and go out for a walk, jog, or swim, or sign up for a Zumba class at your neighborhood gym.

So when you’re getting ready to make your list of New Years’ resolutions, be sure to set goals that are attainable.  You don’t have to quit smoking or drinking alcohol cold turkey.  This is a lifetime commitment. Make a realistic plan to taper off and stick to it.  Ask your doctor for advice, or find friends or family members that are also interested in making commitments to change.

Happy New Year to all!  Out with the old-bad habits, and in with the new, healthy habits for 2012!

Hepatitis Transmission Risk in Hair and Nail Salons – An HBV Perspective

The American College of Gastroenterology wrapped up its annual meeting in Washington, D. C. this week. A few of the topics discussed apply to those living with hepatitis B or the prevention of HBV and other blood-borne pathogens.

Hepatitis Transmission Risk Needs to be Studied in Nail Salons and Barbershops is a press release that discusses a new analysis presented at this year’s annual ACG conference. It looks at your favorite nail and hair salon and barbers shop and discusses the risk of infectious disease transmission. Since HBV is more infectious than both HIV and HCV, it would seem the transmission of HBV might be higher. There is not a great deal of conclusive data out there, but they agree it warrants further study.

Practically speaking, certain shop activities could provide a vehicle for transmission of HBV and other blood-born pathogens if adequate precautions are not followed. Fortunately there is a safe and effective vaccine for HBV, but not for HCV and HIV. No one wants an infectious disease, and if you are living with HBV, you don’t want to be co-infected with another viral agent.

For those living with HBV, it is recommended that personal care items such as nail files, clippers, and tweezers NOT be shared.  At your favorite nail salon, it is possible that “tools of the trade” such as nail files, cuticle pushers, nail buffers, brushes, clippers, are not single-use, or properly disinfected. Microscopic droplets of blood could readily transmit infectious disease.  Even items such as finger-bowls and foot basins need to be properly disinfected.

At this time, there are no OSHA or CDC guidelines for infection control practices for nail and hair salons, and barbershops. They are all state regulated. Please check out this guide to regulations for nail salons, listed state-by-state. Unfortunately there was not a similar guide pulled together for hair salons and barber shops.

It is important to know what is expected at your nail salon in your state, and determine whether or not you are adequately protected. The next concern is whether or not disinfection practices are followed by the shop, and enforced by state inspectors.  You should be able to figure some of this out by spending a little time in the shop, or by asking. If you feel like you’re getting a great deal at a discount nail salon, think again of the hidden risks with a shop that does not disinfect, or use single-use items.  Many shops will maintain personal nail care tools for individual customers.  This is the way to go – whether you bring in your own tools or store them at the shop.

Here’s what you can do to help protect yourself and others:

  • Bring your own tools.
  • If you have cuts, bug bites, or a skin infection, do not get a manicure or pedicure.
  • Is there an autoclave in the shop?  If not, are the instruments properly sanitized or disposed of? How about the foot spas? Are they disinfected in between clients (10 minute cycle) and is the footbath intake filter cleaned weekly? You’re probably not sure, so ask!
  • Do NOT shave your legs immediately prior to a pedicure appointment.  Shaving increases the risk of infection
  • Use your own cutting and filing tools.  Some nail salons will keep tools of regular customers on-site.
  • Avoid credo blades or sharp instruments used for shaving calluses.
  • Reconsider cutting your cuticles
  • If the shop is clearly dirty, leave.  If the “tools of the trade” look dirty or messy, leave. This applies to both hair and nail salons or barbershops.

Your goal is to avoid shop activities that increase the risk of infectious disease transmission.  Basically this means the dispersal of any microscopic blood or body fluids.  Accidents happen, and many are unaware they have a blood-borne pathogen infection. You can also get a nasty bacterial and fungal infections, so a clean shop with proper disinfection practices is imperative for so many reasons.

The same thing goes for the hair salon and barber shop.  Avoid obvious activities that might lead to the transmission of infectious disease. If the shop is poorly maintained, dirty, or disorganized, go somewhere else. If you are having problems with your scalp that causes scabs or bleeding, wait to get a haircut, but remember that others might not do the same.  You want to be sure that hair care items are free of debris (hair and skin) and properly disinfected. This video from the Department of Regulatory Agencies for the state of Colorado (DORA) gives very thorough disinfection instructions, but I find it hard to believe that all of these procedures are being followed in all shops.

If you are a man, consider whether or not it is really wise to get a shave at your local barber.  Many shops no longer perform this service, although it is more common in other cultures. If yours does provide a shave, and you partake, be sure the razor handle is properly sterilized between customers, with a new razor used for each. Razors are such an effective mode of HBV transmission, so be aware.

Keep in mind that if you have HBV and enjoy getting your nails done on a regular basis, or visit the hair salon regularly, please be aware of the fumes emitted from the various chemicals in nail and hair products. Many of these fumes are not liver-friendly, so if you must, please be sure to frequent a shop where there is good ventilation.  Fortunately there are greener alternatives out there, but not all shops are using them. Good ventilation is key.

When my kids were little, I discouraged all nail polish for my little nail-biter, and toluene free polish when I relented.  Now there are better alternatives for everyone, so take advantage of them.

So next time you step into your neighborhood nail or hair salon or barbers shop, take a look around and make sure you are satisfied with the conditions.  There are some form of infection control and disinfection practices in place, but are they being followed?  You might just have to ask!

 

Living with HBV and Dealing with “Itchy” Skin

The previous Hepbtalk blog discussed skin manifestations associated with hepatitis B and liver disease. This is a follow-up with some suggestions on dealing with rashes and pruritus (itchy) skin. Unfortunately, I have experience with this.

Most people living with HBV have episodes with rashes that itch, or with an itch without the rash. Rashes can be caused by all kinds of things, but the skin truly does let us know when there is something going on with our body. We may not be able to eliminate the itch, but we can work on providing the body with a little relief, and to be sure we do not do anything to make the persistent itching worse.

First, consider the root of the problem. It is possible that your rash and itching are unrelated to the current status of your HBV infection.  Unless you have serious liver disease, this might be difficult to pin down since many living with chronic HBV have compensated livers that perform all of the necessary liver functions required for life.  That does not mean you aren’t going crazy with itchy skin, but it is important to look at other factors that may be contributing to your pruritus.

  • Are you currently being treated with IFN or PEG for your HBV?
  • Have you recently started a new medication?
  • Do you have allergies, seasonal, food or otherwise?
  • Do you have other symptoms that might relate to another virus or infection?
  • Have you recently switched laundry detergents or rinses?
  • Have you recently switched any of your personal care items – shampoo, soap, creams, deodorant, etc.

Try to determine if there is a pattern associated with your skin problems.  Any of the above can cause rashes or pruritus without the added complication of HBV or advanced liver disease from HBV. I was convinced that HBV was the root of all skin problems, but I was wrong. That’s why it’s good to look at other possible sources so you can at least eliminate the things you have control over.

Here are some simple things you can do to help reduce the degree of pruritus:

  • Choose products that are unscented including laundry detergent and dryer sheets, along with shampoos, conditioners, creams and other personal care items. Unscented products are better for you liver, anyway. Everyone in my house is clean, but there is no fresh, clean smell.
  • Avoid soaps and use gentle skin cleansers like Cetaphil (another favorite in our house).
  • Use moisturizers that contain a minimum of alcohol, since alcohol is drying.  There is sometimes a balance with thick vs. thinner creams. We bounce back and forth between Cetphil and Eucerin, but you might have to test a few of them before you find the one that works best for you.
  • Take tepid rather than hot showers and baths, but be sure to bathe daily.
  • Wean your kids out of the tub ASAP.  This broke my heart, but the extra time in the bath is drying.  (However, oatmeal baths are recommended, even though this didn’t work for us). Don’t spend too long in the shower.  Learn to take a 5 minute shower.
  • When you come out of the shower, do not completely dry yourself, and immediately apply gentle cream or lotion from head to toe to lock in the moisture.
  • Use topical steroids in order to combat affected skin patches.  For kids we found the ointment, though a little messier, was more effective. Take care when topicals are used for extended periods of time.  It thins the skin, which can be especially problematic in the summer. Don’t forget sunscreen, too!
  • Keep nails cut short to avoid the temptation.  We even tried gloves and socks at night.  Try to avoid scratching with sharp objects, but be sure to properly sanitize them if they are used inappropriately. We often had concerns with “weepy” skin and needed to keep it covered in public.
  • If you choose to add humidity during the winter months be careful to balance that with possible dust mite allergies.  We initially used warm mist humidifiers and that was a big mistake, even though it feels great.  Unfortunately it took us a while to make that link.  As it turns out, a more moderate temperature is better – that and additional circulation with a ceiling fan.
  • Stay hydrated by drinking plenty of water
  • After swimming in a chlorinated pool, be sure to rinse immediately and apply moisturizer.
  • Pruritus is worse at night, so take an anti-histamine like Benedryl or prescription Atarax to help with the itching.  Atarax is effective for a longer period of time, so it’s a favorite in our house.

Although the “itching” in our house brought many tearful nights, and nasty looking skin patches that persisted for years, it did get better over time, with changes. It is important to note that is was much worse during treatment with interferon. Pruritus truly is a horrible, sometimes unrelenting symptom for those with more advanced liver disease.  Although the above ideas are worth investigating, it is important that you discuss severe pruritus with your doctor.  There are more potent prescriptions available that might help reduce the relentless itching.

Got any tips for reducing the itch? Feel free to comment and share your ideas with others living with HBV.

Got HBV? What is Your Skin Trying to Tell You?

The liver is the largest solid organ in the body, and your skin is the largest organ.  It only makes sense that the skin may be a window into what is going on inside your body and your liver.  The problem is trying to figure out what your skin is trying to tell you!

The most common skin manifestation associated with “hepatitis” is the yellowing of the skin (jaundice) and the sclera, or white part of the eye.  Jaundice  may be associated with a newly acquired or acute hepatitis B infection.  It certainly gets your attention and gets you to the door of your doctor, which is a good thing.  However, keep in mind that HBV is often asymptomatic, with few or no obvious symptoms, and jaundice is a more severe symptom of an acute HBV infection. Jaundice may also occur in those with advanced liver disease, and a decompensated liver. Jaundice is due to an accumulation of bilirubin, a yellow pigment, in the blood and tissues.  Your liver is responsible for controlling the levels of bilirubin.  If your liver is having problems performing basic, yet essential functions, yellow skin, eyes, dark urine, and itching (pruritus) may all be due to an inability to filter excess bilirubin.  Please see your doctor immediately if you experience jaundice of the skin or eyes.

It is also not uncommon for those with more advanced liver disease such as cirrhosis to have palmar erythema, which presents like red palms –especially around the base of the thumb and little finger.  Keep in mind that there may be other reasons for experiencing red palms, such as high blood pressure, pregnancy, or elevated estrogen levels. Talk to your doctor if you have concerns.

Spider nevi or spider angioma are another indicator of more serious liver disease. These are not to be confused with spider veins. It is also important to note that 10-15% of healthy adults and children have spider nevi, with no underlying disease. They range in size from 0.5 to 1 cm in diameter, with a dark center, radiating out to fine, red lines. When the center is depressed with the finger, the radiating lines disappear, and then re-appear, when the finger is lifted. Spider nevi may be caused by an increased level of estrogen in the body.  Naturally these may also appear during pregnancy, and in women using oral contraceptives. Following pregnancy and the discontinuation of contraceptives, the spider angiomas will disappear on their own. Like so many basic, but essential functions, the liver is responsible for breaking down and removing excess estrogen. Spider nevi associated with liver disease tend to be large in number and appear on the upper part of the body, face, and neck – especially on the backs of the hands and arms. Once again, it is a good idea to point out these out to your doctor.

Gianotti-Crosti Syndrome is a rash associated with HBV and EBV (Epstein Barr Virus). This rash almost always occurs in children, with 90% of kids under the age of four. The rash may last from two to eight weeks. Basically, it’s just a response to a virus, and nothing to worry about – just an indicator. Kids often have a rash for one reason or another.  If the rash is excessively itchy, talk to your pediatrician about using a topical steroid. Every parent of a child with HBV is convinced their child has some sort of HBV associated rash. (Speaking from experience…) Even the pediatric liver specialist was unsure, so she got a consult with a pediatric dermatologist.  The rash was unrelated to HBV.

Wondering about your finger nails?  There’s a condition called Terry’s Nails which is present in many of those with cirrhosis. The nail appears mostly white, similar to the appearance of “ground glass”, and possibly with a little pink strip at the top of the nail bed.  This is due to a decrease in blood flow to the nail bed and an increase in connective tissue.  Remember that your doctor will not be able to see any of this if you wear nail polish to your appointment.

How about your basic rash that is associated with hepatitis B?  Rashes are most often associated with acute hepatitis B infections, although a recurring rash may occur in those chronically infected.  Talk to people living with HBV and they’ll tell you they have occasional rashes and annoying itching, even if their doctor may tell them they do not.  Could be totally unrelated, or it could be erythematous papular lesions, or palpable purpura.  In other words, your basic red or purplish, raised, bumpy rash. It’s not easy to find specific information linking your basic rash to HBV, but when you consider how the skin is a window to your general health, it makes sense that you may see skin manifestations that reflect your immune system response to your HBV infection as it cycles through various stages, phases and flares.

If you are living with HBV, you know the importance of monitoring your HBV status and your liver health.  Annual, bi-annual, or the schedule recommended to you by your liver specialist, will keep you on top of what is going on with your HBV and any associated liver disease.  However, it is good to take notice of any changes in the skin and nails as the liver is a non-complaining organ.  Sometimes we have to look for evidence that something is going on. That being said, I feel the need to rush to a mirror and check myself out after having researched and written this blog.  The skin may be a window to our general health, but it is not always easy to figure out what it’s trying to tell us. If you have any questions, don’t try to self-diagnose. Talk to your doctor and bring any of your concerns to his attention.

Thoughts on Disclosure for Children with Hepatitis B

If you are a family with a child with HBV, or a family considering the adoption of a child with HBV as a special need, it is important to consider how you will manage your child’s hepatitis B information. As an adult you are making your own personal disclosure decision, but when you are dealing with your child’s personal information, it is a decision that needs to be made with the entire family to be considered. Think long and hard. Once this information is out, you cannot take back.

Something that I did not truly consider when we were making this decision was the fact that this was not really my information, but rather my child’s information. Our child was a baby at the time. We could not know her personality, and what kind of a person she would become with time. We were fully immersed in the baby scene, and were not even thinking about the teenage years. Little did I know that teens have an opinion about everything. My kids lost interest in discussing their adoption story at the store check-out by the time they entered elementary school. Certainly no one wanted to be the adopted kid with hepatitis B. No one wanted to be the adopted sister of the adopted kid with HBV. I cannot speak for other kids, but that was the case with our own children. In general, kids want to blend.

Initially we were concerned about sending the wrong message to our children by not disclosing this information. There should be nothing to hide, so we forged ahead with our information in a couple of small, selective circles. These were carefully chosen groups, nothing permanent like our neighborhood, since we could not afford to move if there were repercussions. Disclosure was abruptly halted after a confrontation with the early intervention team at our home school. Had we not been under the advisement of counsel, I fear the situation would have resulted in a breach of information we might not have been able to contain. I have heard similar stories from other adoptive parents, and it makes me cringe every time.

Parents are fiercely protective of their children – especially when they are young. I have heard heart-wrenching stories of broken friendships, neighbors that no longer speak, and the distancing of family members, all over the disclosure of information that perhaps should not have been imparted. But who knows who will be accepting and tolerant, and who will refuse to let your child play next door? Sadly, people lack basic information about HBV, and even in the U.S., there is a stigma associated with infectious diseases. They do not know anything about HBV, or how it is transmitted. They may not even be aware that their child is vaccinated against hepatitis B. They may choose to err on the side of caution, and choose not to have your child play with their child.

Although we made a family decision to not disclose, there were people that we chose to tell. Disclosing to family did not go the way I had expected, and I’m glad there are a few states between us. Fortunately with time and distance, people forgot about it, because they never fully understood it from the beginning. Disclosure to selective friends worked for us, but there were few that were told. We disclose to all treating physicians.

On the pro-disclosure side, I am aware of families that have disclosed their child’s HBV information and it works well for them. They are pleased with the support they receive from friends, school, church and family. They have made the decision to educate and raise awareness as a family. I commend that. Perhaps I am even a little envious, because that is how it should work! Unfortunately it did not work well for our family, where we live. Now that my daughter is in high school, she is okay with her HBV status. Fortunately she’s not truly “out there” with her information, but she has contributed in her own way to raising HBV awareness in selective circles.

To disclose or not to disclose, it’s a family decision. Think about it, and do what is best for your entire family.

To Disclose or Not to Disclose, That is the Question

Choosing to disclose, or not to disclose your hepatitis B status is a very personal decision.  The key thing to keep in mind is that once this private information is out, it cannot be reeled back in.  It’s best to stop, and give it serious thought before you move forward with your decision.

Being diagnosed with a chronic illness can be overwhelming.  Many are shocked by their HBV diagnosis. Some have been living with HBV since birth, but because it is often a silent infection, with few to no symptoms, they are surprised they are infected.  Others may have no idea how they were infected. A support network of friends, family and loved ones is important at this time.  Sadly, your news may elicit a variety of responses, from loving support to complete avoidance.  Unfortunately, there is often a stigma associated with HBV.  People are afraid of what they don’t understand, and most are ignorant about infectious diseases.  It’s something that happens to someone else.  Little do they know that HBV does not discriminate.

Here are some important points to consider:

  • Location – Where do you live?  If you live in a large city or community, you may be able to better pick and choose who learns of your HBV status. In a larger community you may have a little more flexibility to move around, or make changes if your HBV disclosure is a problem.  If you live in a small town, with few employment opportunities, and a hand-full of nosy neighbors, you might want to think long and hard about telling anyone in your community.
  • Family – Only you know your family.  Depending on your ethnic background, there may be a cultural stigma associated with having HBV. Break the news gently and be prepared to supply easy-to-understand information. Remember there is the possibility that you acquired your HBV infection at birth, and other family members may be at risk and need to be tested.
  • Work – Unless you are symptomatic and missing work due to your HBV, it might be a good idea to keep your hepatitis B status under wraps.  In many countries, an HBV infection destroys careers.  Even subtle discrimination can ruin your reputation at work.  If you require time off due to HBV, be sure to take it up with human resources.  Your information will be kept confidential.
  • Sexual partners – It is more important than ever to ensure you are having protected sex if you are not in a monogamous relationship. If you have HBV, you do not want a coinfection with another infectious disease like HCV or HIV.  Insist on protection, and use a condom.  You owe it to yourself and your partner(s).  Be sure any significant others are vaccinated.  If you believe they have been exposed, then they need to be tested. The flip-side is the concern with a relationship that turns serious, where you have not yet disclosed your HBV status. This is a difficult balance.  They may be hurt or angry that you did not disclose, earlier, and yet you don’t want to enter every new relationship spilling all of your private info.
  • Friends – Friends have been made and lost over personal information such as HBV disclosure. If they can’t accept you, living with HBV, who needs that kind of friend?  This is true, as long as they will respect your privacy and choose not to disclose your private information to others. Take a good look at your friends, and remember that many really are acquaintances.   Acquaintances do not need to know the details of your HBV status.  It’s your choice who you decide to tell.
  • Medical professionals – All health care providers must practice infectious disease protocols and standard precautions.   It keeps everyone safe.  That being said, it is important that your doctor is aware of your status.  He is making treatment decisions and prescribing medications that could effect your liver health. HIPAA regulations will keep your private information protected at medical offices.
  • Support groups – It might be difficult to find a traditional hepatitis B support group, but there are wonderful on-line HBV support groups out there.  This is a great environment to query others living with HBV about who they choose to tell and not tell.  It helps to hear it from others that truly understand what you are going through.  Friends and family may love you, but it’s very possible they won’t fully understand what you’re going through.   As the newness of your HBV diagnosis wears off, I can promise that things will get better.  Give yourself a little time….

Disclosure truly is a personal decision. There is no right or wrong answer.  Much depends on your personality and what you can live with. When you make the decision to disclose, you need to make the commitment to educate.  This is admirable because it takes courage to stand up, raise awareness, and be out there with your personal story.  The response from others may surprise you – for better or for worse!  Just remember that before you decide to disclose, you had best be informed.  Educate yourself, so you can educate others on the HBV basics and help raise awareness.  Let friends know  how HBV is transmitted.  Encourage hepatitis B vaccination. Arm yourself with simple explanations.  Your goal is not to scare your audience, but rather raise their awareness of those living with hepatitis B.  Remember it’s your decision, but take your time…