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Hepatitis Social Community
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Avatar universal

The forum has slowed way down

I can remember many years ago this place was super active.  Now its down to a trickle.  It shows that Hep C is about done as a health issue.   I for one never imagined this playing out and seeing the death of hep c.  

Wising all SVR

36 Responses
2059648 tn?1439770265
I agree.  All in just a few years time big changes in the treatment of Hepatitis C treatment.  There are now college courses in Hepatitis C treatment.  Tons of education being offered.   The Hepatitis C information sites are popping up to assist those seeking help with hepatitis C treatment options.  

But the recommendation to test baby boomers is a recommendation.  Its not a mandate.   I know where people just refuse to be tested.  Where the doctor didn't even ask the person about being tested for Hepatitis C.  I had to demand that my baby boomer spouse be tested.  

What I have seen in my community is people still fear Hepatitis C as some
disease only drug addicts get and surely THEY couldn't have it.  So why
test for something like that.  

I had a neighbor's baby boomer daughter tell me her husband told her to stay away from THOSE people.   Of course I went into the speech about
how Hepatitis C isn't that easy to get but because of the baby boomer's
past practices you and everyone should get tested and there is a cure for
many.

Yes this forum has slowed way down.  But its clear Hepatitis C is far from
NOT being a health issue.  There needs to be people talking to people who
have this mind set that it couldn't effect them.   I have spent some time looking at community volunteer connections that might be available.  I have yet to come across a connection because there you go....nobody wants to talk about it.   It might be a topic in the drug culture, HIV and
those seeking public health assistance... but it hasn't gotten its message out to middle america like it should.  

Take the time to bring it up to you neighbor and you will understand the lack of personal communication needed to educate this group of "not us' public in denial.   I'm ready to do just that if the opportunity arrives.  

Theres still much work to be done.  

Avatar universal
Yes lots more work to be done.  But its so much better. Can you imagine seeing TV spots  just 3 years ago.  New DAA'S that Cure almost everyone.  Think back before Riba.   I hope the dragon is dead and we are just mopping up.  
Avatar universal
Please look for a message that I sent to you. TY.
Avatar universal
I agree it's really slowed down ALOT!  I've been around here on and off since 2003.  I've seen people come and go.  Met lots of good people, then, as they cleared, they moved on with their lives, as they should.  But, in alot of ways, it does make me miss the comraderie of my group of friends.  There were people that were here for a few different treatments lasting anywhere from 24 to 72 weeks. Some of these people I posted with for a few years in a row and then, they trickled out, moved on, and I never heard from them again.  I understand that, I really do.  I've taken breaks off of here before as I felt like I needed to because I was getting too down in the dumps and I felt like I needed to step back and forget about HepC and remember that there is more to life than Hep C.  Anyway, just my 2 cents worth.  Susan400
Avatar universal

I'm so glad you posted! In my heart, I can't imagine, that if I've been fortunate enough to be treated, no matter what my outcome, that I would ever not want to be available to others, not to mention our common bond & friendships built! So, I'm really glad you were so real in your post!! I also am thankful for DWBH's strong, caring and very truth filled post!! There are so many yet to reach!!
Thanks to both of you, for a lot!
Many blessings,
Randy
163305 tn?1333672171
I'm not sure if I agree that the reason this site has slowed is due to hep C slowing as well.
There are a lot more sites available to people now than there were years ago and some prefer those.
.
6708370 tn?1471493810
I always worry that some regulars have died. How would we know, really, if that were the case?

If one goes into hospice, it's not likely you would be spending your last few days on a support group site

Hawk has a point too. There are many other sites that I have checked out

But this one is hands down the best in my opinion because of the level of discourse, the research shared, the heartwarming level of support from others

It's the site for the Advanced Heppers - not in terms of illness because that's all over the map, but in the level of engagement and knowledge

Avatar universal
I've looked at other sites over the years, but still prefer Medhelp....  I'm sure others have a different feeling, that's okay, we're not all cut from the same cloth and that's what makes people interesting.  If we were all alike, wouldn't the world be a boring place? I think so.  Susan400
29837 tn?1414538248
What's interesting to point out is, that while a lot of us are being cured with Harvoni that have failed before, there are many many who have Hep C and don't know it. The unfortunate thing about those people, is that when they start to get sick, fatigued and develop other symptoms, many will blame it on other things, like working too hard, depression, the flu and more. So quite a few are bound to develop Cirrhosis, and the cycle will start all over with more people posting here. It's inevitable in my opinion.

Mag
Avatar universal
I agree that there will always be 'newbies'', but they won't be sticking around after they get clear in 8-12 wks, like these newer drugs are doing with the new developments. They get clear, move on.  Where as in the past, when the drugs weren't as good and the treatments lasted longer, people stuck around here for years, waiting around to hit on the right treatments, get cleared, etc. Now, it's not like that.  You don't have the length of time, getting to know people, before they are out of here. I'm happy, that people are clearing and moving on and not getting sicker.., even people like you and Hector post transplant, are getting clear.., which is amazing.  I'm just saying that I miss the support of my former tight knit group of friends.  I thought I was going to be one of the people moving on, when I finally got clear last summer.  Yes, I know about Harvoni, but I'm not ready to take on another treatment yet...  Anyway, how are you doing? When are you supposed to have your surgery done?  Hope your news is good.  Susan400
29837 tn?1414538248
Surgery is scheduled for the 2nd. All tests completed. I was cleared by the Pulmonologist and cardiac specialist. One has to go thought these tests regardless of what one may say to a doctor that these tests aren't necessary because "I fell fine", because surgeons are terrified of lawsuits if the unexpected happens because of an existing condition that was not tested for. So, now I wait for the time and wait for recovery so I can go back to full time entertaining. I hope you're doing well...

Mag
Avatar universal
Thanks for the update, Magnum.  I'll be keeping you in my thoughts and prayers.  Let us all know when you're back up and entertaining and we know then, that you're okay!  Susan400
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