World Hepatitis Summit 2015: Infographic

9 09 2015

WHSummit_infographic





Hepatitis A, B, C, D, and E

28 07 2015

It’s World Hepatitis Day.

We want to use this day to remind moms and dads that hepatitis is around and some of it can be prevented by vaccination.

Hepatitis C is a bloodborne virus that attacks the liver. It is not vaccine-preventable. If babies are infected it’s usually from their hepatitis C+ mothers or, and this is unlikely these days, from a blood transfusion. It’s unlikely because the screening process of donated blood is pretty darn thorough. But, germs have slipped through that screening process.

Teens and young adults may become infected, primarily through sharing of needles, sex with an HCV+ person, or sharing personal items such as razors or toothbrushes that may be contaminated with HCV.

There are effective treatments that work on a good portion of hepatitis C-infected children. But not on all infected children. Work is ongoing in this area.

Hepatitis C is frequently a chronic infection, meaning that if treatment is not effective, you will be infected for your lifetime.

Hepatitis A is vaccine-preventable. Normally, it’s passed person-to-person through the fecal-oral route, which is when something you eat or drink has been contaminated with hepatitis A+ poop. If you haven’t been vaccinated, chances are you will become infected.

This virus makes you feel lousy and can, rarely, do serious damage to the body. It does not become a chronic infection. It infects you and then goes away, like a cold virus.

Hepatitis B is vaccine-preventable. It’s transmitted in a lot of ways—mom to newborn, sharing needles or personal items, sex with an infected person, even household (nonsexual) contact. If a mom is aware of her infection prior to giving birth, shots can be given to the baby within 12 hours of birth that are effective at stopping tranmission of the virus from mom to baby. However, when babies are infected, almost half of them in the US will become chronically infected. In developing countries, that figure shoots up to 90 percent.

Today, despite the vaccine, approximately 1,000 babies become chronically infected with hepatitis B each year in the US. Many of the moms-to-be who are infected are unaware of their infection. Every pregnant woman should be tested for hepatitis B so that action can be taken at birth to prevent infection of the newborn.

Hepatitis D is an odd virus. You have to be infected with hepatitis B before you can get hepatitis D. It’s vaccine-preventable in that, if you get immunized against hepatitis B, you won’t be able to get hepatitis D.

Hepatitis E is similar to hepatitis A in the way it is transmitted—the fecal-oral route. It’s rarely a chronic infection. For most people, they get it, get sick, and get over it. It can however be dangerous for pregnant women, with a 10% – 30% fatality rate for this group. It’s not often found in the US but can be easily picked up in some other parts of the world.

That’s about it for hepatitis in the US. To prevent a hepatitis infection (and lots of other infections), wash your hands throughout the day, put barriers between yourself and another person’s blood or body fluid, and use the available vaccines. The trick is to do these things with everyone. It’s impossible to tell who is infected with what, most of the time, so the safest course of action is to assume everyone is infected with something and then act accordingly.

Got any tips? Hope you share them will us in the comments.

By Trish Parnell

Image courtesy of Johns Hopkins





Telling Our Kids They’re Infected With Hepatitis or HIV

16 01 2012

If hearing your child is infected with HIV or hepatitis B or C is the worst that can happen to a parent, telling your child about the infection runs a close second.

When should a parent disclose? How should they tell them? What will a child ask? Will they ever forgive the parents who infected them? Are silence and secrecy justified to protect a child from a painful diagnosis?

Two pioneers who have peered into the disclosure cauldron are Lori W. Wiener, coordinator of the Pediatric HIV Psycho-Social Support and Research Program at the National Institutes of Health, and Heidi Haiken, coordinator of Social Work at the Francois Xavier Bagnoud Center in Newark, N.J., an innovative program that works with parents and children with HIV.

For more than 10 years, Haiken and Wiener have worked with hundreds of families infected with and affected by HIV on the emotional and social issues related to the disease. Wiener, who has a PhD, has researched and written about the impact of disclosure on family members.

Their combined experiences have produced two cardinal rules for parents of children infected with chronic, viral infectious diseases:

  1. Never lie. You don’t have to name the disease if children are very young, but never, never lie. The damage to the parent-child relationship will surpass any short-lived benefits gained by deceit.
  2. Disclose as early as you can, especially once kids start asking questions. The longer you wait, the harder it gets and the greater your chance of undermining your child’s trust in you.

“We even tell parents who come to the center that if they don’t tell the kids by the time they reach sexual maturity, we will,” Haiken said. “But of course it’s much, much healthier to have this information come from the parents.”

Both women acknowledge that disclosing is very traumatic for parents. “For some parents, it’s just devastating,” said Haiken. “They feel guilt because they infected the child because of their past sexual behavior or drug use. They feel guilt that the child has to suffer. Even for parents of children who contracted it from transfusions or are adopted, disclosure is extremely difficult.”

Wiener, who has written several research papers on this topic, found the longer parents withheld the diagnosis, the more embedded the lies became and the harder it became to disclose the truth. “Parents often fear that once they disclose new and different information, that their child will no longer trust them,” she said. “Following disclosure, many of these children feel embarrassed that other people in their family have been aware of the diagnosis before they had been informed. Once disclosure takes place, these issues and feelings can be successfully dealt with in individual and group counseling sessions with parents and children.”

Haiken and other social workers at the center work hard to help parents work through their guilt, or at least face it without flinching, before they disclose.

“I tell them you didn’t mean for this to happen, it’s clear you never wanted to hurt your child, look at all the wonderful things you’ve done for your child,” said Haiken. “After a while they get there, they see it, but it’s still very difficult. No parent ever wants to infect her child. It’s something they felt they had no control over.”

In terms of disclosure, parents who are themselves living with HIV have additional challenges to face. They fear disclosing their own life-threatening disease to their children. But generally, says Wiener, by the time children reach ages 6 to 10, they realize the consequence and finality of death. It is useless to shield children this age from the knowledge that their parents have a serious or terminal illness.

The disclosure process, timetable and style are often dictated by the parents’ health. Can they focus on their kids and execute disclosure, or are their own health problems overwhelming? Are they getting the support and time they need or are their own medications, insurance forms and other factors too overwhelming?

“Foster or adoptive parents have the luxury of not having to worry about their own illnesses, so the emotional and financial stress on the entire family may not be as intense,” noted Haiken.

The journey to disclosure begins early, says Wiener. “The child and parent should first have a sense of trust—that is the highest priority.” Disclosure occurs little by little in age-appropriate ways as soon as a child can communicate. Just like talking about adoption, it’s always on the table, though not all the details or medical terms may be exposed just yet.

Ideally, when the parent discloses the conversation should go something like this, suggests Wiener.

“Do you remember when I told you that you had a germ in your blood? That’s why we have blood work done every year. (And) Do you remember I told you that you got the germ from blood? Well, that germ is a virus that is called HIV or hepatitis….”

“You see, the disclosure dialogue is a constant building process,” she said. “If the child asks why the parent didn’t tell them earlier, the parent needs to be able to say, ‘I never lied to you, I told you what was wrong, I just hadn’t told you name of the virus.”

It may take a child weeks, months or years to absorb the diagnosis. “Try to be where the child is at when they ask questions,” wrote Wiener. “Let the child know that no matter how difficult the subject matter, he or she can always ask questions or share feelings. Be careful, however, not to provide more information than the child wants or is prepared for. They may not be ready for a virology discussion.

“You never want to be in the position of telling a 12 year-old about his or her disease that you have never even referred to before,” she added. “That is my main concern in the disclosure process. We’ve interviewed a lot of children who have been disclosed to. Most felt they had been told at the right age and by the right person except those whose parents had a doctor tell them. Those were the only kids who remained upset about the disclosure process.”

At NIH, counselors work intensely with parents of HIV-infected children to prepare them for the disclosure discussion. Social workers even have parents write out what they will tell their children and then play the part of the child in role-play situations. Generally, parents should be prepared to answer the following questions, depending on the child’s age and development. (Some questions apply if the parent is infected also.)

Why did this happen to you?

Where did you get it from?

Are you going to die?

Am I the reason you got sick?

Who else in the family has it?

Why do I have it?

Why don’t (siblings) have it?

Am I going to die?

Will this hurt?

Who else knows I have this?

Who can I tell?

What will happen to me and (siblings)?

Can I get married?

Can I have children?

Here are some general guidelines Wiener has identified for parents to consider as they prepare for the disclosure discussion.

Where do you want to make the disclosure and who should be part of the discussion?  

“You don’t want to have a ton of people there, just those whom the child trusts and feels most comfortable with,” cautioned Wiener. “Try to anticipate the child’s response based on his or her emotional age and maturity. Be careful never to disclose when you’re angry, or during an argument. Have the discussion in a safe, comfortable environment.”

What is the most important message you want your child to walk away with from this discussion?  

Possibilities include: Nothing is going to change… I am just now giving you the name of the virus… We will always be there for you… I will never lie to you… Nothing you did caused this disease.

How exactly will you disclose the actual diagnosis?  

“We have parents write out how they’d like it to happen, and they always start out with, ‘Do you remember?’ Weave in pertinent aspects of the child’s life and pick up the threads of your past discussions about infections,” suggested Wiener. “Rehearse the questions and answers, including ‘How did I get it? Can I get married? Can I have kids? Who else knows about it?’”

If the diagnosis is to be kept secret, who else can the child talk to?  

“If parents tell a child not to tell anyone, the first thing a child will do is go tell someone,” said Wiener. “They’ll feel resentful if they have no one to talk to. Parents need to find others in the community for the child to talk to. If there isn’t anyone nearby and the child wants to tell his or her best friend, I would tell them to talk with me, the parent, first. I would explain that not everyone is as educated as we are, and it’s important that we make a plan and educate the friend about this infection first. After all, we don’t want anyone to treat us badly.”

Give child a journal or diary or a way to express their feelings about the infection.  

Encourage the child to use art or writing to express feelings. “If HIV had a face, what would it look like? Or start a discussion with, ‘If I had a million dollars, I would get rid of this virus. What would you do with a million dollars?’ Keep those discussions going,” Wiener suggested.

“It is usually not until days or weeks after disclosure that the child has the courage to ask more questions,” she added. However, after finally making the disclosure, some parents feel so relieved and so exhausted from the ordeal that they may not have the emotional energy to talk about it again. This blocks open communication at a time when sharing concerns about the disease and its impact on the family is most important.

Red flags to look for in a child following disclosure.  

These include difficulty sleeping, changes in appetite, withdrawal, ticks, new fears, mood changes, difficulty concentrating or hoarding things.

If you see any such problems, talk to your child and if necessary, seek help from a social worker or psychotherapist. Remember, disclosure is not a one-time event and a child needs constant reassurance that they did not cause the disease.

Don’t forget siblings in the disclosure process.

Whether or not a sibling is told depends on age, said Wiener. “If the sibling is close in age, I don’t make it a choice, the sibling must be told. But, I do give them a choice of whether the infected child tells the sibling or if the parents tell the sibling. You need to give the child a sense of control. Living with secrets in the home does not promote a healthy emotional climate. I try to minimize the amount of secrets or lying that’s going on. However, if there’s a medical procedure or if they’re on interferon which makes them grouchy, it’s important that siblings know why.”

Even after disclosure is made, the full reality of the diagnosis may not come about for years. “It may not be until someone dies, or they get sick for the first time or they can’t go to a party and drink like everyone else that the reality really sinks in,” said Wiener. “At that point, it becomes an emotional reality, not just an intellectual reality.”

Wiener finds most parents do feel relief after making disclosure. The burden of secrecy is lifted, and children who already intuitively know something is wrong often feel better after they are told of their diagnosis. Siblings, especially if they are older, are also relieved when the veil of secrecy is lifted.

“The demands of keeping the family secret is a heavy burden for a young sibling and may threaten healthy development,” Wiener wrote in a study of siblings of HIV-infected children. “As inquisitive peers begin asking siblings why their brother or sister is sick, it becomes increasingly difficult not to tell the secret. One 9-year-old girl describes: ‘I want to tell people. Right when I almost say it, I remember in my head I’m not allowed to.’”

Resentment of the special treatment given to the sick sibling may cause the healthy sibling to feel less loved, Wiener explained, particularly if no explanation for the preferential treatment is provided.

Heidi Haiken, who has worked with more than 400 HIV-infected kids, has found disclosure to be beneficial to parents and kids alike. “By and large, the kids do well and are glad they’ve been told,” she said.

But disclosure is just a step in the journey. Parents must be prepared to ask, probe and continue the dialogue about health safety, standard precautions, medical treatments, good nutrition and the fundamentals of safer sex with their infected children.

“In our program, we start teaching safer sex at age 10 to 13,” said Haiken. “We give out condoms, talk about masturbation and how to keep yourself and your partner safe. We don’t deny they’re sexual beings, we focus on how to be safe with it, how drugs and alcohol can make you do things that aren’t safe.”

That safer sex discussion is just one more elaboration on the discussion that began when parents tell their infected toddlers never to touch anyone’s “boo-boos.”

Most parents of infected children and teens don’t have a Heidi Haiken or Lori Wiener in their hometowns. And, they can’t count on local schools to teach standard precautions or to delve into the nitty gritty of safer sex procedures. Most parents must be open and honest as they continue these discussions, no matter how painful or awkward, throughout their children’s lives.

By PKIDs staff





International Conference on Viral Hepatitis

9 05 2011

The International Conference on Viral Hepatitis was held in mid-April in Baltimore.  The conference description was as follows:

There exist significant challenges to diagnosing and linking to treatment large numbers of hepatitis B virus (HBV)- and hepatitis C virus (HCV)-infected patients who are unaware of their serostatus and thus are not on either anti-HBV or anti-HCV treatment. Additionally, bottlenecks preventing expanded access to HBV and HCV care must be addressed in light of shifting treatment paradigms, which requires an expanded number of clinicians from multiple disciplines to deliver HBV and HCV care.

Presentations will feature state-of-the-art information on HBV and HCV research, clinical perspectives, and medical treatment, both within the context of HBV and HCV monoinfection, as well as coinfection with HIV. The conference will feature 24 oral abstract presentations, poster sessions, plenary presentations, invited panel discussions, and clinical case study reviews.

A couple of findings from the conference that could interest parents of HCV+ kids include:

Forty percent of HCV+ patients are not adhering to their treatment. The key to this is identifying those patients who are depressed and treating the depression along with the disease. Those who were treated for their depression showed higher rates of adherence and, consequently, higher rates of viral suppression.

SPRINT-2 was a study of previously untreated HCV+ genotype 1 patients looking at boceprevir with peginterferon/ribavirin.  In this study, this combination of drugs increased sustained virologic response  significantly over standard therapy. Another study looked at patients who had been previously treated with standard therapy but either did not respond to treatment or relapsed.  For those patients, boceprevir was added in re-treatment and significantly higher rates of sustained virologic response were achieved.

These studies were not performed on children, but we know that what works in the adult population will eventually find its way to the pediatric population.

Please read the conference PDF for more abstract findings.

 





Sabina Gets Active Against HCV

10 03 2011

(Guest post in a series from Sabina, our 15-year-old friend living with hepatitis C.)

Dear Readers,
 
Yesterday, I had my fourth interferon shot! And I didn’t feel any pain.

Yes, I was anxious but when I actually got the shot it was easy. So far, I’m lucky that I have not had any symptoms after the shot.

Sometimes I get headaches, nausea, and tired from the ribavirin pills. But I still feel upbeat and I’m really glad that so far I can do the sports I love to do.

Courtesy: Meredith James Johnstone

Last Tuesday, I started dance classes for the first time and I’m having great loads of fun. This Friday I have tryouts for volleyball. I’m excited for that. I don’t know if I can keep up both sports but I’m going to try.

Beyond sports, I feel like I’ve been able to do most activities and work at school. I haven’t missed any time, although I’ve been pretty tired. I’ve been going to bed early, like around 8 instead of 11.  That’s a big difference but I’m tired and I get to the point where I can’t keep my eyes open any more. This makes it harder to get my homework finished, but if I work on managing my time I can get everything done.

My parents say that if I get too tired I will have to let some activities go. I realize I shouldn’t overwork myself. But it feels good to be active and to have goals set for myself. 

One question I have for my readers is this—are there any other kids out there who are like me and going through this or thinking about getting treated? What are your views? What are the obstacles you are running into? And are you having any serious symptoms? I would love to hear from other people.





HCV+ Teen Tells It

24 02 2011

My name is Sabina, I live in San Diego, and I’m 15 years old. I have had hepatitis C (HCV) for about 13 years now and I have just recently decided to get rid of it and started treatment.

On MLK day I’m happy to say that I celebrated my first full week of being on the treatment. And let me tell you it wasn’t as bad as I thought it would be.

I started the treatment on January 10, 2011, and now I take two drugs. Every Monday I have to give myself a shot at night. When I was about to get my first shot, I was so nervous and scared. I thought the needle was going to be inches big but it wasn’t. The needle was an inch if not half an inch big. And it didn’t hurt one bit. But still I’m scared for every Monday to come.

Every morning I take pills after breakfast, and in the evening I take another dose after dinner. And so far I haven’t gotten any serious symptoms. Though everyday I get headaches in the evening that really hurt, but as I was doing some research I found out that it’s better that you don’t take medicine to try to make it better. Instead you should eat and drink lots of water, and it really does help.

From talking to people that have gone through the process before, some tips I learned were carrying a water bottle around with you is smart so you can always have water to drink, to not overreact if something happens because its happens to everyone, and to make sure you tell your parents everything from itchiness to headaches to how you’re feeling.

Something that I’m always concerned about is forgetting to take my pills every morning and evening. But you don’t need to worry about that. You should know that if you forget to take your pills in the morning you should never take 4 that night at once. All of that medicine at once can put a dent into your body.

Another thing that I’m worried about is my sports. But I was told from the doctor that after a few months I should be ready to go back to my everyday activities and sports. I’m a volleyball player and club season is coming up, and the doctor says I should be healthy enough to play. Great news, huh? So if you are a sports person don’t stress about not playing.





Itching to Get a Tattoo?

17 05 2010
A collection of tattoos.

Credit: Skype user "SwanDiamondRose"

Humans have adorned their bodies with tattoos for thousands of years. Even the Iceman, whose remains are about 5,200 years old, was so marked.

Why, then, is tattooing viewed with raised eyebrows by parents and secret longing by our youth?

As parents, we’ll put aside the whole “It’s a lifelong commitment and that cute butterfly on your arm is going to go all funhouse mirror on you when you’re old!” thing, and concentrate on questions of health.

We can’t speak for the secret longing of youth because those years have evaporated into the ether for us.

So, the health of it…

Those tattoos aren’t painted on. Your skin is punctured and the ink injected underneath. Because of this, you may end up with severe and long-lasting itching, skin infections, or even HIV, hepatitis, or other bloodborne diseases.

Tattoo regulations vary by state, and sometimes within a county or city.  Some are governed by the health department, while others are regulated by the department of cosmetology.

While there are regulations, not all tattoo parlors are diligent in following safe, accepted precautions.

A professional tattoo artist takes pride in his artistry and safety habits, and will encourage you to ask questions. If you’re determined to get a tattoo, do yourself a favor and follow these suggestions:

  • Ask if you can observe a tattoo in process.
  • Look around and note the following about your tattooist and the parlor:
    • What are the qualifications of your tattoo artist?  Ask to see certificates and credentials.
    • Is the tattoo shop neat and clean?  Ask to see the autoclave. Does it work?
    • Does the artist wash his hands and use and dispose of sterile gloves appropriately?
    • Latex gloves can be used only with water based ointments.
    • All equipment including needles, tubes, pigments (ink), ointments and water must be single use only, and come out of sterile, sealed, dated packages, or disposed of after use.
    • Ensure that all non-disposable equipment is autoclaved.
    • Watch for cross-contamination.
    • Be sure that the area is completely disinfected after each client with a commercial disinfectant or bleach solution.
    • Tell your tattooist if you’re pregnant or nursing, have a heart condition, severe eczema, or problems with keyloids. Your tattoo might have to wait, or may not be recommended.

This is not the time to look for a bargain!  If you want a tattoo, seek out a professional tattooist who is experienced, and follows strict safety practices in his tattoo shop.

And finally, please think twice about getting a tat where cellulite may form. It’s just, we can’t, it’s too…gah! (You’ll thank us later.)

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