Open Chats

30 11 2006

PKIDs’ open chat room is a real time, online place for parents to connect with other parents facing similar challenges.

Any registered participant may use the chat room at any time. We also designate weekly times to help parents meet up with each other. Currently those times are:

• Tuesdays at 9-10 a.m. Pacific Time (GMT -08:00)
• Tuesdays at 6-7 p.m. Pacific Time (GMT -08:00)

Registering for the open chat room is as easy as dropping us an email. Include the following information in your email:

1. Your name and contact info (such as an email, in case we have a problem registering you)
2. “Open chat” in the subject line
3. A username of your choice (which will be displayed when you’re in the chat room)
4. A password of your choice

We will send you an email confirming that you have been registered. You can then login to the chat room at any time by visiting the open chat room login page and entering your username and password in the boxes provided.

If you have questions about the chat (how to use it, e.g.), suggestions for improvements, or need to report abuse or technical problems, email us at webmaster@pkids.org.





Thanksgiving

20 11 2006

My daughters have a disease that could kill them. When the oldest was a baby, I was so angry and scared, I sometimes couldn’t breathe.

The thousands of days since spent on this unexpected path have changed me. The fear is still there, but no longer brings nightmares. The anger is harder to control – probably a personality quirk.

I’ve learned that everyone has something. It doesn’t matter what it seems like from the outside looking in – no one’s life is perfect. Don’t get me wrong, I’m not gleeful that others’ lives aren’t going the way they planned; knowing it just makes me feel less alone.

In the States, Thanksgiving is almost here. We’re not overly sentimental at my house. Well, I am, but the girls have an annoying habit of laughing when I get to sniffing about some little thing. I rarely get to indulge my schmaltzy side.

But, since they’re not here to see me write this, let me say that I’m thankful for today and every yesterday I’ve had with my daughters.

I’m thankful for fierce hugs from little arms, wet kisses and sleepy yawns. I’m thankful for other parents who have, over the years, taken time with me.

I’m thankful for my extended family – not always understanding the medical lingo but constantly willing to listen.

I’m thankful I get to go to work each morning and that I care about what I do.

I want to say I’m thankful for tomorrow, but superstition warns against counting unhatched chickens, so I’ll just say Happy Thanksgiving. Whatever that something is that affects your life, I hope it leaves you room for a little thanks. It feels kind of good.





Hep B Foundation

14 11 2006

If you’re interested in hepatitis B, there’s an organization you should know about – the Hepatitis B Foundation.  The work this group is doing at their new Institute is particularly exciting.

The Hepatitis B Foundation http://www.hepb.org/  is solely focused on hepatitis B and is a valuable source of information about hepatitis B. 

Their mission is…“to finding a cure and improving the quality of life for those affected by hepatitis B worldwide.”

They focus on funding focused research, promoting disease awareness, supporting immunization and treatment initiatives, and serving as a source of information for patients and their families, the medical and scientific community, and the general public.

In 1991, Paul and Janine Witte and Dr. Timothy and Joan Block started the Foundation with the personal support of Dr. Baruch Blumberg, who won the Nobel Prize for his discovery of the hepatitis B virus.

More recently, the Hepatitis B Foundation established the Institute for Hepatitis and Virus Research http://www.ihvr.org/  

The Institute’s mission is to use discovery science to find new therapies for viral hepatitis and liver cancer; to advance its research discoveries through traditional scholarship and educational opportunities; to nurture biotechnology; and to promote public health outreach programs to improve the quality of life for those affected by viral hepatitis.

The components of the Institute for Hepatitis and Virus Research (IHVR) include a large compound library and screening program for anti-hepatitis drug discovery, as well as a proteomics facility that utilizes two mass spectrometers to examine proteins and other molecules from those infected with hepatitis B and C in order to develop early markers of disease.

The Institute for Hepatitis and Virus Research (IHVR) is using pharmaceutical grade high-throughput robotic systems to screen its own compound library of more than 80,000 carefully selected diverse molecules for therapeutic activity against hepatitis B, hepatitis C, and other clinical targets that fall out of the mainstream of pharmaceutical interest, but are important health matters, nonetheless. The anti-hepatitis virus imino-sugar structure activity relationship derivative program will be continued.

The theory regarding hepatitis virus persistence and evasion of proteasomal degradation will be explored. The theory regarding the role of host defense pathways in the augmentation of hepatitis B resistance to antivirals will also be explored.

The Institute is using mass spectroscopy-assisted discovery of antigenic epitopes from hepatitis B and C-infected cells, as well as other technologies to discover epitopes that might have therapeutic value and serve as early detection markers of cancer. New assays for the detection of liver cancer and colorectal cancer are also being developed, using novel genomic and proteomic methods.

 





Virtual Connections for Kids and Teens

9 11 2006

PKIDs just opened up forums on its website – come, look, spread the word! One forum is for kids ages 8-12 and the other is for teens ages 13-18.

Forums bring people together and make them feel they’re part of a group connected by similar challenges in life. At PKIDs, the challenges might be living with a chronic infection on some days, and on others, schoolwork or siblings. As a member of one of PKIDs’ forums, a kid or teen has a place to talk about disease issues with others facing similar challenges, or they can just be kids, talking about stuff that interests their age group in general.

With the recent problems surrounding MySpace, Internet safety is a concern for many parents. There is no way to guarantee a child’s safety and parents are ultimately responsible for their children’s access to and use of the Internet. PKIDs has taken the following steps to help make sure that kids/teens have a place where they can be themselves and connect with others, but also stay safe:

•    Parent/guardian approval. Kids ages 8-12 must have the approval of their parent/guardian to join the Kids’ Forum. This serves several purposes:

o    Initiates parent-child conversations about online safety
o    Helps ensure that all forum members meet the age and disease status requirements

•    Supervision. PKIDs’ staff administer both forums. As administrators, we are able to do many things to keep the forums safe and positive, including:

o    Review the list of forum members and “ban” objective usernames or users who bother others on the forums
o    Set differing levels of privacy for the various forums (all forums are currently set at a level which requires a person to register before posting in any of the forums)
o    “Lock” or delete forum topics that are not appropriate
o    Frequent review of forum conversations to check for any “suspicious” activity

•    Welcome message. When a kid/teen joins the forum, they will read a welcome message with tips such as:

o    Tell your parent/guardian and the forum Admin (PKIDs) if someone is bothering you online.
o    NEVER agree to meet in person with someone you meet online, even if they seem really nice.
o    Do not give out your real name or your contact information (such as address, phone, email).

•    Avatars. An avatar is a little photo or graphic that is displayed by a forum member’s username. They help personalize a member’s presence on the forums and add a fun element to being on the forums. At this time, however, we are not allowing avatars on PKIDs forums so that no child can post any personal photos. In the near future, we plan to make the avatar option available in a restricted manner, either by requiring pre-approval of avatars, or by providing a pre-selected set of avatars that users can choose from.

Signing up for the forums is easy – just visit www.pkids.org/vc_forums.php. We are excited about this opportunity to provide our kids with a place where they can be themselves and connect with peers facing the challenges posed by HBV, HCV or HIV/AIDS.  Please contact us at pkids@pkids.org if you have any questions or concerns about the forums.





Shingles

3 11 2006

All of my older relatives have had shingles.  It’s a painful skin rash caused by the same virus that causes chickenpox.  After we recover from chickenpox, the virus stays in our bodies and sometimes it can reappear later as shingles.

My relatives who went through a bout of shingles reported extreme and long-lasting pain.  Until recently, I’ve been dreading going through the same thing at some point.  I’m so relieved they now have a vaccine to prevent this very painful rash.

The trick is to try and get vaccinated before shingles develops.  The vaccine doesn’t treat shingles or the pain that accompanies it – it’s for prevention only.

The vaccine was approved by the ACIP (Advisory Committee on Immunization Practices) on 25 October 2006 for people age 60 and older, even if a person has had a case of shingles in the past.  In rare instances, people may develop two or even three cases of shingles over time.

The CDC (Centers for Disease Control and Prevention) said this about the vaccine and shingles:

While the ability for the vaccine to prevent shingles declined with age, the risk of chronic pain among those older vaccinated persons who still developed shingles was lowered. The most common reported side effects in vaccine recipients were mild, such as reactions at the injection site and headache.

Varicella zoster virus (VZV) causes varicella, or chickenpox and becomes dormant within the nerves following exposure or a case of chickenpox. It can reactivate later in life to cause shingles. About 25% of people develop zoster during their lifetime, and there are about one million cases of shingles per year. The risk is highest in the elderly, and it increases with age starting at around 50 years. Shingles often causes chronic pain, and the risk of suffering chronic pain increases with age, starting at 60 years. Shingles is much less contagious than chickenpox.

I’m not quite 60 yet, so I wish they’d lowered the recommended age for this vaccine.  If you or your loved ones are of the appropriate age, get vaccinated.  I’ve seen what shingles can do and it’s too painful.