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Post Info TOPIC: Hep C and information
Cinnamon Girl


Guru

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RE: Hep C and information
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I`m bringing Lisa`s post up again as it`s a very topical subject.  I think we can all agree that there`s still a huge need for more awareness and accessible information about Hep C to try and combat the stigma and correct some of the myths and misinformation which surrounds it. 

When I received my diagnosis in 1995 very little was known about it and the treatment options were poor.  We`ve moved on such a long way since those days but from my own experience the general public is still quite ignorant about what it is and how it`s passed on.  I still feel reluctant to mention the fact that I had Hep C to people unless I know them well, for fear of being judged. 

Clear basic medical information presented in an intelligent way, along with personal experiences before and after treatment would go a long way to help get the message across, I think.  Best of luck with this documentary, Lisa, it`s a such a worthwhile thing to do. smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Enavigo3891


Senior Member

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Posts: 154
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Hi Lisa,

I think this is a fantastic idea. I have actually been talking recently about how little information there is out there and let me be the first on here to offer you whatever assistance I can provide. I will be up front and say that I am NOT one of the guru's around here who know an incredible amount about the science and the meds like Tig, Malcom, Jill, etc.; however, I represent a tiny sliver of the HepC positive population that, in my own opinion, feels very distant from the rest of the population - children who are born with it. As the chances of a child being born with it are slim, obviously we are few; I think the only other person on here I've come across in my boat is Nathan who recently posted in the new members section, the young man who survived his transplant, is currently treating and starting college. I think this is an important group to point out because; at least from my perspective here in the states - all I ever really heard about Hep C (publicly or gov't education) was that it was something drinkers and drug users get and something "older" people get. Obviously we all know that's not true but what information is out there for a 13 year old kid who gets diagnosed with this disease they know nothing about and can barely pronounce? Nothing! Even recently I was surfing through Hep C websites and found several with small video bios, etc.. none of them had someone my age (30) on there. Obviously, regardless of age, we're all fighting the same dragon - but there are many "milestones" of growing up as a teenager and college graduate that take on a whole new light when you do them with this infection. For example, I didn't find out until I graduated in college that I couldn't have the career I wanted because HepC was an "automatic dis-qualifier" ... so I chose a different but similar choice only to be told the same "automatic dis-qualifier".

I could go on for a very long time on this topic but I guess my main point is - as a kid, teenager, young adult - I felt that I was the only one and nobody understood what I was going through. There needs to be more education out there.



__________________

Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 
Loopy Lisa


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Hi everyone,

I am considering making a documentary about Hep C. One thing is clear, the information available is poor, hard to research if you don't know what you are looking for, data is hard to decipher, and a lot of information is outdated or miss understood. I checked with Jill if it was Ok to ask the people that know the most - you guys, as we all have this set of viruses. If you feel comfortable I would like to ask you all to post here what you think is needed in the documentary, information, medical information, anything you feel is relevant! I have to go and work on a project abroad for a few days but I look forward to coming back and reading your answers. Many thanks, L



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
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