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Hep C Discussion Forum -> General Discussion -> World Hepatitis Day (July 28, 2012)-Bringing awareness to Hep C
Post Info TOPIC: World Hepatitis Day (July 28, 2012)-Bringing awareness to Hep C
Jaded


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RE: World Hepatitis Day (July 28, 2012)-Bringing awareness to Hep C
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I'm sorry to say this event received absolutely no media attention from the local news today in Vancouver or Canadian National news. Did anyone living elsewhere notice any media attention?

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64 year old EOT 10-28-15,SVR24 April 21 2016  ALT-12/AST-23 June '19 - fibroscan 6.9 F-0 July '19
Karen


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Hi Iris,  I have taken your suggestion and made the video public. The video is no longer restricted, please feel free to share. Thanks, K

http://www.youtube.com/watch?v=athmGIedTBo



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
greenqueen


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YOU DON'T WANNA MESS WITH ME - Hep C rap video
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I posted this video on the forum a couple of years ago wink

MC Hep C lets you in on his plans to get into your bloodstream and what he'll do when he gets there. This animation, inspired by street art, takes you on  a journey inside and outside the human body. Using a hip hop song written and performed by young men in custody, it presents key information about hepatitis C.




http://www.ceh.org.au/mhss/info_for_service_providers/transmission_iv.aspx


Transmission is a creative partnership between young people, prisoners, artists, community organisations and government. Its purpose is to increase understanding of hepatitis C through culturally appropriate short films.

There are some more videos you can watch using the above link smile

Steff xx

 




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Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.
greenqueen


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Great vid, Karen! smile

Steff xx

 

 



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Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.
Alleysun


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ok i definitely will :)



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Allison, Genotype 1b. Started triple Tx (Victrelis) - 2.27.12 Viral Load started at 6.5 Million. Liver Biopsy- early stage 2 fibrosis. Und Wks 4-16. End Of Tx will be 9.9.2012 :)
Karen


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Keep me posted with your ideas...would love to hear them.



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Alleysun


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That's a great idea Karen! thanks :) I'm big into Zumba and dance so that would be a cool idea for next year when I have more energy. And i'll have a year to plan!



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Allison, Genotype 1b. Started triple Tx (Victrelis) - 2.27.12 Viral Load started at 6.5 Million. Liver Biopsy- early stage 2 fibrosis. Und Wks 4-16. End Of Tx will be 9.9.2012 :)
Karen


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Hi Iris, thanks for the post and a great idea. I am looking to see if i can get a few things edited and make the video public.

Hi Allison, never heard of National Dance Day until now...Quickly looked it up...This would certainly provide a very visible avenue for hep c awareness and appeal to a broad range of people.  Imagine if we all took a similar concept, had an event in the major cities were we live-on the same day...something to toy with for next year;)



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Alleysun


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Tomorrow is also National Dance Day :) I wish somehow we could use dance/national dance day to raise more awareness about hep C



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Allison, Genotype 1b. Started triple Tx (Victrelis) - 2.27.12 Viral Load started at 6.5 Million. Liver Biopsy- early stage 2 fibrosis. Und Wks 4-16. End Of Tx will be 9.9.2012 :)
Iris Dragonfly


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Hi Karen, That is a cool vid, and even though it isn't finished, it still says a lot. This was the first time I visited a video that was restricted....maybe you would consider releasing it to the public...as part of the awareness day tomorrow. Blessings, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
Karen


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Hi Donna,

Thanks...We should all put our heads together and come up with something we can all get involved with, in all our different locations to put Hep C in the forefront.  Could be great fun!!!



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Shep


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Karen--it is really a great video. I was just in Washington DC and there was an AIDS conference going on-with the quilts being displayed on the Mall. I was wondering why there is not the same level of public awareness of Hep C. I am ready to do my part!
Shep

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
Karen


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Hi Jill... thanks for your supportive words.

Hi Steff, thanks for posting the links...needed.

Hi Lindsay, WOW, great to hear that Boston is on top of this regardless of the motive.  Sure wish Detroit was doing the same..

Hi Trish, education and awareness is so important on so many levels.  It was pretty special gift when my friends offered to help... 



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
LUV2RYDE


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Great video and yes there is a lot of work to be done to spread awareness and education. That is so cool you got your friends to do that video.



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Geno type 1A Started Abbott clinical trial mid Jan 2013. :-)

Viral load when I started this trial 4.75million  Went 12wks on placebo and started real meds on 4/5/13 after 1wk  on real meds 25 after UND @3wks,6wks.w00t: Done trial 6/27/13 and still UND.

 
Lindsay


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Thank you for sharing your video. I live outside of Boston, and there are a fair number of public campaigns on the bus and subway systems. I'm not entirely surprised because Vertex and Merck both have large lab in Cambridge and Boston. When Renee first told me she had Hep C, I didn't even flinch because I knew more about the disease. Not everything, but certainly more than most people probably do. Awareness is key!

Lindsay

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Supporter for my fiancee LadyAlaise (Renee).  Where else would I be but beside her on this journey?!?
greenqueen


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http://worldhepatitisday.info/

More info on World Hepatitis Day

Get Involved The Hep C trust

Steff xx



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Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.
greenqueen


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Thanks Karen,

I've not had a look yet, but will be doing smile

Steff xx



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Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.
Cinnamon Girl


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Thanks for this, Karen, a timely reminder about the shocking lack of awareness and understanding of this disease. This is an excellent film, very well thought out and constructed even though it wasn`t finished.  Jill xx

 



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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.

 

 
Karen


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Hi Malcolm-it was certainly an eye opener.

PS..Thanks..I have learned a lot from your postssmile.gif



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
mallani


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Great video Karen. Shows how far we have to go.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Karen


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When I was diagnosed with Hep C, I received a letter from the State of MI stating that I was on the registry of infection diseases.  On my first visit to the Hepatologist, I was treated as if I had done something so terrible that some how I deserved this life sentence. I also found it hard to find anyone willing to talk about his or her disease without humiliation.  It was through these experiences early on that I decided I would not allow shame or fear to stifle my efforts to change the stigma of HVC.

In the US (at least in Michigan), there is minimal effort being placed on Hep C awareness, very little in the way of educating our youth. In 2011, I decided to spearhead my own project in the recognition of a void in public awareness.  I found two friends, a director, a film crew and an editor willing to give their time and expertise to help develop a video geared toward teens and young adults. Since young people are attracted to creative media, we decided to develop a multimedia presentation that could be used in a variety of ways, one being social media sites. The idea was to interview young people from the ages of 21-33.  The goal was to show that without general awareness of Hep C, a young person could face the risk of derailing hopes and dreams for the future by one at-risk behavior.  Once we had a strong sense of what we were looking to capture, we took the film crew to the streets outside of Detroit for a day of shooting.

I have attached a link were you can view the results.  You will see from the Hep C awareness standpoint, it is a complete eye-opener as many of our participants had very little knowledge about the disease, which confirmed that we are on the right track.  Sadly, the video has never been completed and the mission was aborted.   http://www.youtube.com/watch?v=athmGIedTBo

On World Hepatitis Day and every day, I am committed to continuing my efforts to bring awareness in anyway I can.  Everyone on this forum should be applauded for their resilience, compassion and strength in doing the same and for their part in helping to eradicate Hep C forever.



-- Edited by Karen on Tuesday 24th of July 2012 03:50:23 AM

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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
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