Is it time to raise awareness?

Continueing the previous "Oprah" thread, I would answer with a resounding "YES"!  Even if this disease does claim me in the end, I have taken a stand to not "go silently into the good night".

I plan to write my Congressmen, Senators, and even the President to begin opening some eyes and see if money can not be raised to find kinder, gentlier, and more effective treatments.  I also believe that the public stigma so many fear needs to be cast off so that people are no longer afraid to come forward when they are diagnosed for fear of what others might think and wind-up facing their fears alone or anonomously.

Any suggestions others might have would be greatly appreciated.  I dread to think how many more lives will be lost before a line is not drawn in the sand and can not bear the thought that my remaining silent might make a difference which could result in either saving or losing even one person's life.

[Alady1620]

Getting involved in a support group and organizing them in your area would be a good start.

[bobbyullc]

i forgot your bx stage but if you are only a 1 or 2 you probably have about as much chance of this disease "claiming" you as getting hit by a subay train in iowa. relax. do not give hep c one minute more of your life than is absolutly nessesary.
if a stage 3 change that to getting hit by a subway in nyc.

bobby

[GrandOak]

We already have an excellent support group in our area called LiverHope (evidenced by the 9th annual Hepfest we are having next weekend here which is often attended by folks from around the country and even some international attendees).

However, support groups are fine for those who have, are, or considering going through treatment.  But, the need for public awareness of this disease needs to grow beyond support groups.  It's about time that heppers take to the streets and march like the HIV/AIDS folks did and wake up the sleeping apathetic masses to the real magnitude at which this disease exists, not only here stateside but around the world.

Folks need to be contacting their representatives demanding more funding for research into better more effective treatment options and to find a vaccine like HAV and HBV to protect our children, grandchildren, and great grandchildren from having to face what most of us are facing.

How many folks have you met here, elsewhere on the net, or in other support groups who are not only frightened by the news that they are infected, but reluctant to acknowledge it to others for fear of being catagorized and/or shunned because of the stigma they think it carries by the apathetic, ignorant masses?  It's a sad testament that people still feel this way about Hep or HIV when these diseases are epidemics that encompass the entire globe.  As was pointed out in an earlier post, it's an even sadder testament that HBV is so prevalent in Asian and other third world countries when there IS a vaccine for it!!

As for me, at a Geno 1A stage 4 original VL 72,000,000 with last test showing it had risen from 1,800,000 in April to 2,9000,000 at end of June, it often feels like several subways have already gone over me (I must be standing on tracks at Grand Central station).  It also has enlightened me to the reality of my own mortality.

[NYgirl]

I have two friends who have died of liver complications due to HepC.  I have another friend who has liver cancer and is not expected to live (she too hepC)

But then again I DO live in NY and the subway DOES quite often hit people here.  That must be it!

(But it shows why I am so PROACTIVE about treating as compared to waiting I guess).

[bobbyullc]

ques. where they stage 1 or 2?
bobby

[Upbeat]

The Gov did pay for a study in 1999.  Hepatitis C Virus Infection Among U.S. Military Personnel: An Assessment Of Risks and Screening Strategies.    This report is the reason the Goverment has taken little action with the hep-c virus.  It makes for some interesting reading.    



http://www.bloodbook.com/hep-vet.html

                                                           Ron

[jennkPA]

How about in schools? I never heard of this in health class, though we were pounded with HIV and STD info. I write a column for my college newspaper and plan on informing my campus about this virus and it's treatment. Maybe if students who will be our doctors and politicians have heard of this or someone's story who has dealt with it they'll be more inclined in the future to pay attention and affect change.

I've discovered upon returning to college, that college students love to fight a good fight, so armed with a cause and lots of info they'll run with it.

[GrandOak]

Thanks for sharing Ron.  I found particularily interesting the part where it says in the summary:

"As expected in any mass screening of a low risk population, questionable test results were common, which required extensive re-testing to determine who actually was infected. For example, in the testing of recruits the number of inconclusive results was actually higher than positive test results, which required additional analysis by polymerase chain reaction assays that have yet to be approved by the FDA."

I didn't think it left a lot of credence to their findings when they admit from the start that their screening methods were questionable.