Saturday, June 2, 2012

Weekend Reading- Hep C Top Social Networks and Blogs

Hello Folks,
Most weekends this blog offers up a few substantial links to relevant HCV information, click here for previous "Weekend Reading" articles.

This weekend readers will be provided with links to hepatitis C support and information found on two popular social networks; Facebook and Twitter

These social sites offer current updates, and personal experiences along with support from people who understand the anxiety, fear and medical obstacles experienced after being diagnosed with this chronic and sometimes serious disease.

Despite all of these benefits, social networking has a potential risk if you're not careful.

 Facebook is not meant to replace your professional care, members offer support not medical advice.

Remember information you receive about HCV treatment, liver health or medications doesn't come from medical professionals. If you join a group that does have a healthcare professional, they do not know your particular medical background. The information may not be accurate, always consult with your physician before making any changes, or before taking any "natural" product such as herbs or

The Disease

Liver disease in people with hepatitis C affects everyone differently, while it may progress slowly in most people, it can also progress quickly in others. A few host factors including duration of infection, co-infection with HBV or HIV, age, race, gender, genotype, alcohol use, smoking, other underlying disease (diabetes), all have an impact on liver disease progression.

Connecting With Other People Who Have HCV

 Facebook is one way to connect with other people coping with HCV. You may run into a member which shares close to the same medical scenario as your own, rather they are healthy and living with hepatitis C, waiting to undergo therapy, or living with serious health conditions related to the virus.

HCV Treatment and Facebook

If you're considering HCV therapy, surrounding yourself with support will get you through those many ups and downs.  Sometimes just sharing information about HCV or treatment can go a long way.

Treatment is not for everyone, only you and your physician know if treatment is right for you. For people that do begin therapy, the side effects are not easy, but most people find out that it's something they can handle. The bottom line is that each person is different.

Hang On Its Gonna Be A Bumpy Ride

When it comes to therapy, general discussions about those lovely side effects are best left up to the people who hated them. Forming these close bonds online certainly provide what our families or physicians can not.


Its simple, they haven't ridden "Mr. Toad's Wild Ride." 

They have no idea what it feels like to feed a rash and starve a brain.

Whats The Price Of Admission ?

We have two price points, both are non-refundable.

Months on interferon and ribavirin.

2- More Expensive
Adding; either incivek or victrelis.  
I'm just kidding folks, but one thing I can attest to is the power of humor. For me treatment was a whole lot easier to get through when the people around me had a great sense of humor.  I found those people online, we laughed our way through therapy and lived to tell about it.  Laugh, its good for the soul

Before you check out these Facebook pages take a look see at; The Hepatitis Comics: Levity for the Liver

We begin with Facebook and HCV therapy

This Facebook page is one of my favorites, with 123 members waiting to answer your questions. The devoted woman (find out her name after you join Facebook) diligently watches over her wall, adding news and HCV research while in the throes of HCV treatment. Click here to join in on the support.

If you're fighting your way through treatment, Trish understands the challenge. She is eight weeks into 48 weeks of triple therapy. Please join her Facebook page by clicking here, or join Trish at one of  best and most established HCV support forums online.

Oh My Aches and Pains!
This talented author has an incredible blog you won't want to miss. Connect with Selena on Facebook, and Twitter.

Recently she updated her blog with this article;15 Ways Hepatitis C Treatment is Kicking My Butt. Read more about Selena here @ Oh My Aches and Pains.

Support For People After HCV Treatment

 After landing on this Facebook page you'll have the opportunity to connect with Jared Bryan Smith the author of Hippopotamus Sea. His book on sobriety, battle against hepatitis C, and subsequent spiritual awakening is written first hand for anyone to read, for free if need be, on, or download it on Smashwords for less then a dollar.

In April on the authors blog he writes about his post-treatment experience with brain fog, headaches, and the reason he made a conscious choice to use Celexa over opiates, you can read the entry here.

The Facebook support group was set up by a gentlemen after he completed HCV therapy. For many people who complete treatment side effects may linger, this is a great place to connect with people who understand that these post side-effects "Aren't All In Your Head." Click here to join the support group.

HCV Vets On Facebook Educational Website & Support Forums
This group is provided by past and presents members of the United States Military with Hepatitis C (HCV) to assist fellow Retirees / Veterans / Active Military and Dependents with awareness to the Hep C virus exposure methods during military service. This informative Facebook page also offers information on the VA healthcare system and important political issues for veterans who are living with HCV. An additional great resource for information is the related HCV website. As a side note the individuals behind this Facebook page are experienced advocates who have devoted years to helping veterans with hepatitis C. Click here to join the group and begin making a connection with other veterans.

Support and HCV Awareness

Daryl Luster is responsible for the "Hepatitis C Kills"awareness poster which he has prepared for World Hepatitis Day. To learn more about HCV and view additional posters visit his incredible website.

I visit Daryl's Facebook page on a daily basis, (he has no idea I stalk him). One day I found this point on quote Daryl made casually in a reply to another Facebook member.

"Knowledge and understanding gives empowerment, and that is so very important for walking the path of HCV."

On Facebook Daryl truly connects with people who are dealing with Hep C. The good news is that Daryl is virus free, still he continues to offer support and awareness.

Click here to visit his Facebook page and join this compassionate, kind, HCV advocate.

For all those people living in the UK, this Facebook page is currently active laying the groundwork for a HCV awareness campaign unlike any other; Mr. Peter will be spreading HCV awareness from atop three peaks spread across the British Isles.

Read about Peters hepatitis C awareness campaign through the Hepatitis C Trust Website.

Learn more at his Facebook page or contact Peter on Twitter. Peter is awesome, and delightful to chat with, post on his wall!

Autoimmune Hepatitis And Hepatitis C Support

This Facebook page was created by a lovely lady who suffers with both hepatitis C and autoimmune hepatitis. The group offers support to all, although it was set up to support the Muslim community battling HCV. If you live in Pakistan, this Facebook page is a great starting point for support. Click here to join the group, and please visit the accompanying website; The Hepatic Muslim.  

A message from the web mistress;

"My Dear Sisters and Brothers, The Purpose of my starting this site, InshaALLAH is to raise awareness and educate others about Hepatitis, and to offer a means of emotional support for other Muslims who have this disease."


For me, Twitter is a beneficial tool for keeping up with HCV and liver disease news. I check updates a few times a day, and follow links to abstracts, full text data, clinical trials, and articles on the new drugs in development.

News and Journals HCV
No. 1–rated independent monthly newspaper providing news and information for 17,000+ gastroenterologists, colorectal surgeons, hepatologists, PAs and NPs.

AASLD is the leading organization of scientists and healthcare professionals committed to preventing and curing liver disease.

CCO Hepatitis‏@CCO_Hepatitis
Clinical Care Options creates innovative, interactive Hepatitis CME programs. Follow us to be the first to know when content is published.

Reuters Health‏@Reuters_Health

HCV Information

A peer reviewed, independent on-line audio/video/blog channel broadcasting to the global gastroenterology & hepatology community

Alan Franciscus‏@HCVAdvocate
Info about hepatitis C including news, updates to HCV Advocate Web site, HCV trainings, conferences and traveling around the country and speaking about HCV.

Lucinda K. Porter RN‏@LucindaPorterRN
Author of Free from Hepatitis C.Working to make the world healthier & free of hepatitis C, while offering occasional levity for the liver

The Caring Ambassadors Program mission is to help improve the lives of those affected by long-term diseases through advocacy, information, and support.

Hep Magazine‏@hepatitismag
Hep is the go-to online source for educational and social support for people living with hepatitis C (HCV), hepatitis B (HBV) and hepatitis A (HAV).

Hepatitis Foundation‏@The_Liver_Lady
The Hepatitis Foundation International is dedicated to promoting liver wellness and preventing disease

Transplant HCV

Ian Quill‏@ianquill
Ian Quill : My World - I blog for me and people like me, beating HepC

Clinical Trials

Clinical Trials
Offering clinical trials news alerts on thousands of medical / heath conditions.

This website specializes in Complementary and Alternative Medicine CAM for the Hepatitis C Virus HCV.

Misha Cohen‏@DocMisha
Doctor of Chinese Medicine - Hepatitis B, Hepatitis C, Cancer Support, Metabolic Syndrome X, Chinese Herbs, Acupuncturist, Integrative Medicine

HCV Support

Dedicated to Providing Knowledge, Support and Encouragement to those affected by Hepatitis C.


The Hepatitis Education Project aims to support people living with viral hepatitis and increase awareness about the disease through education and advocacy.


Fight Like A Girl C‏@FightLikeAGirlC
Join the Fight Like A Girl Club, tell your story, give and receive support, share hope, and claim your Power!


The latest news and views about the pharmaceutical industry, with Ed Silverman of

Pharma News
Tweeting pharma industry latest news and trends from various pharma platforms accross the Web

Adam Feuerstein The Street
Sr. Columnist at TheStreet


The Hepatitis C Mentor & Support Group, Inc.
The Hepatitis C Mentor and Support Group (HCMSG) was founded by two Hepatitis C patients. The founders joined forces in 2010 to ensure that Hepatitis C patients in New York State have access to information and support services that will help them manage and overcome Hepatitis C with strength, dignity and fellowship.

A MINORITY voice in the battle of Hepatitis C - "the silent liver killer"

News and research

Written by Dr Paul Targett-Adams
After completing his PhD on the molecular biology of herpes simplex type 1 DNA packaging at the MRC Virology Unit at Glasgow in 2001, he embarked upon his post-doctoral research career focusing upon the intricate molecular details of hepatitis C virus (HCV) RNA replication. Later, in 2008, he joined the Antivirals Research Unit at Pfizer UK to continue his work on HCV with the added bonus of directly translating his research knowledge to investigating HCV mechanisms amenable to drug discovery programs. It was at Pfizer that his interest in HCV NS5A inhibitors, an exciting and intriguing new class of anti-HCV molecules was first piqued. In 2012 he joined Medivir AB in Stockholm as a Principal Scientist committed to discovering and developing novel antiviral medicines to combat a range of virus infections of global medical significance; including, of course, HCV

Other HCV Websites
This page of links will take you to the premier Hepatitis C sites and keep you informed with breaking news, clinical studies, new drugs, podcasts, newsletters, support, personal experiences, chat rooms, forums and more.

If you know of a great Facebook page or Twitter account you would like to add email me or reply to this message.

Have fun, laugh, learn, and share.

Tina :)

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