New Hepatitis Communities?

[Med Help]

Hi,

We've had a couple of requests recently to create a few break-out communities from Hepatitis, and also the Autoimmune Disorders Community. Before doing this, we wanted to see what everyone thought about it. The suggestions, and communities we are considering are:

- Hepatitis A
- Hepatitis B
- Autoimmune Hepatitis

Each of these communities would be dedicated to that particular type of Hepatitis. This forum would remain as is.

In other areas, we've found this has worked well, but let us know your thoughts.

Thanks.

MedHelp - Harry

[Anonymous225]

Sounds good, but live chat would be even better...

[jack1642]

Is it possible to have an exclusive hep b forum? I can see our number is growing and very soon might form a state we can believe in.

The HCV population out number HBV so please, consider an all HBV state.

[Kalio1]

I think it's a good idea, many who visit here looking for info. on other types of Hep are not always properly addressed as most here are knowledgable about Hep C, the other types, not so much.
I think it would really help people. The idea of a basic information page for each type is a really good idea too.

[mikesimon]

I think it is a good idea. I wonder how much activity the autoimmune site will get but I could be surprised. You know what they say: Build it and they will come.
Mike

[desrt]

This is your site. You seem to derive some pleasure from constantly fiddling with it. Do as you wish.

[zellyf]

Been OOT for a few days so getting caught up.  

I think a Hep B board is a great idea.  I'm on board but I do worry that it might not get enough activity based on what we've seen at this board.  Strange as there is no shortage of HBV infection worldwide.

[sfbaygirl]

I agree. Threads get buried and I always feel powerless b/c I have no info for those with Hep B.  Having there own place is a good idea. Thing is some of these forums have so few people they tend to wither....but I think for Hep B it is a good idea.

Linda

[stevenNYer]

I try to provide some info on those with HepB info, but I must say it's a chore to comb for the HepB thread.  Despite it being a new thread, it gets bury quickly since the are so many HepC threads being bump up, which is wonderful for the HepC community.  But it makes HepB posters feel ignored or even unwelcome.  I mean HepB posters have personal mail me their questions.  I answer but I feel it would be helpful if its on the forum for other to learn from.

In order for the HepB community to have a chance for similar success as a HepC forum, we need our own forum.  I think given the chance, some of the knowledgeable HepB folks would man the forum to see it succeed.  I for one will look forward to that.  Again, questions and community for HepB should be ONE forum.  

What do the HepB folks think about this?  

[alagirl]

Its funny you should mention that, I was just thinking yesterday that we are doing such a disservice to people - particularly with hep b and fulminant hepatitis (hep a being more basic in nature) as we are seeing a LOT more in the way of requests for info about hep b treatment (a few a day lately seems like) and none of us can answer them.

yesterday in particular, we had a gentleman talking to us about pegasys as a standard treatment and another woman writing in for help for her son, who had been prescribed a two month course of godex in the phillipines, which I think may be a drug produced in that country only.

That's just one example of my own frustration at not having any good answers for people obviously struggling for information for themselves or for family members.  Most of the people we have coming here for hepb have questions and not answers so I have a feeling that might need to be a moderated forum, or a partially moderated forum.

I will try to help anyone who comes to the hep forums because I remember how scared I was when I was diagnosed, I just get frustrated that there isn't more to help the hep b group in particular.

[cierra2007]

Good

Let's do it!  Always ready for Changes ..................


Thank you  

Cierra2007

[kcrandy]

good idea.  i am not sure but an FAQ area for hepatitis;  ( hcv,hep-a, hep-b, aid,etc ) to lead someone to the correct forum would be a  good idea. i think it would address some of the issues stated earlier and help to guide new people to the correct forum.

look forward to seeing the changes.

[merryBe]

excellent idea in that the specific effects,cures, drugs, treatment lengths etc all have particular  differences making it hard for the afore memntioned subgroups to be adequately served within what is predominantly a HCV site.

Many times even basic questions they have go unanswered because either no one knows  or the few  who do are not present. Over time these threads may have more chance at developing experts of their own, given a separate forum.

it may also be of service to develope a "Basic fact" page for each disease...an info page that people sould reference that might be updated by a doctor in the field regularly, or one which you would allow  certain members with medical experierience to edit/update.

another thought might be "a most common questions link.
perhaps some in here could help in compiling one.
Not that there are not other sites with good info...but one with doctor supervision would be valuable as treatments info changes rapidly sometimes.
Just last week I went loking and the ohly site with a gd source list I could find   was 5 years old....that means some sites are not being updated with any regularity which does the patient a real disservice.

anyway, love your idea and think it will give some folks a better chance to bond and learn from one another than they currently have.
maryB

[geterdone]

I think this is an excellent idea but I have a question? The Hepatitis forum as it stand now has a Forum side and a Community side and when implemented the new format would have a Hepatitis, A, B, C and Autoimmune FORUM, but all four groups will still be sharing the same Community Side of the Hepatitis C forum? I think this would get very confusing for participants with in each group with all four sharing the same Social Community Forum. I think it would be more prudent to set up each forum with both a Forum and Community side and if the participants wish to cross talk on each forum they can do so without un-necessarily cluttering one Social Community with many different interest. Besides, isn’t this why the “Watch List” was created? to be able to keep track of many Forums one visits or holds an interest in, in ones profile and be able to respond to that particular post or reply? Sorry, I may be wrong about this but just asking.

jasper

- Hepatitis A
- Hepatitis B Forum / Social
- Hepatitis C Forum / Social
- Autoimmune Hepatitis Forum / Social

[jack1642]

Excellent idea. Lets go for it.
Thanks

[burned74]

i think its a great idea and i really like the new forum as well.

[Myown]

I think it's a real good idea. I like the combined social side idea too. And while we are on the subject of ~new ideas,~ I just want to say that I am now used to the new format and I like it. I did alot of complaining and I am a believer in whats done in public must be corrected in public..so with that said, I complained about MH new set up "in public,"and so now I want to compliment you "in public" and tell you that you did a nice job with the new format.

Thanks.

[stevenNYer]

It would make sense renaming this main forum to HepC.  It fits well to the majority of the posts and mission of the forum.

However, I would suggest that a seaparte HepB forum be created to include medical issues, research aspects of Hepatitis AND community in ONE forum.  Because that's what chronic HepB is about.  It's about monitoring and support following initial diagnosis.

  

[Deb_c430]

Hi answered on the other side, I think this is a great idea.    Good luck

[Med Help]

Hi,

We could rename this for Hep C, and then just leave the Social as the social for all the Heps. That would work as well.

MedHelp

[Bill1954]

Personally, I think that would be an excellent idea; this forum is composed primarily of HCV patients, and with few exceptions, HBV and autoimmune folks are definitely underserved the way it is now. Hopefully others will add to this, but I can’t see a downside to this at all.

Thanks, Medhelp—

Bill

[Yellowfin]

if yo do that, this site should be renamed to "Hepatitis C" .