Would you JOIN the social community ... 
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A couple of months ago I created an Exfoliative Cheilitis Group on the biggest social community sites out there (the one where you usually use your real full name). So far only one person has joined.
The group is "open", which means that is is searchable, anybody can join, and the group will show up in the persons profile page. This is probably one reason why people are hesitant to join.
Would you the social community group if it was secret and invisible (i.e. do not show up on your profile page)?
If I make the group secret it will no longer be searchable and you need an invitation to join, which makes it harder for people to find it and more work for me managing members. But it is better to have a group with members, than a group without them.
Thank you for answering,
/David
- Re: Would you JOIN the social commun... lipshitz
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MoreThis is a reply to # 1,498,723Hey David,
Have you investigated alternative grouping sites? Or creating just a Page that people can become fans of, like this one for angular cheilitis (with one fan)
http://www.facebook.com/search/?init=srp&sfxp=&q=+cheilitis#/pages/Angular-Cheilitis-Treatment/27858691925?ref=search&sid=1318417897.1119567152..1
While I think it is important to come clean about this with close friends and family, not everyone may feel like they want the scrutiny of their acquaintances and business colleagues, and not everyone keeps those worlds separate on FB, and FB has invasive ways of telling people what you like and are a member or group of, so I think you may not get many takers. I wouldn't join even if it were a closed group, for the record.
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- Re: Would you JOIN the social commun... ECblog
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MoreThis is a reply to # 1,498,749Thank you for your answer.
I have not thought about creating a fan page, since I'm not too familiar with FB.
I totally understand and respect the fact that people are hesitant to join, especially when the group show up in your profile. That is why I asked this question. If I made it a "secret" club it would not show up in your profile.
My reasons for starting the group can be read in the second reply from me in this thread.
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- Re: Would you JOIN the social commun... #96334
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This is a reply to # 1,498,723what's the point of joining a group? It will probably be just like this forum- Re: Would you JOIN the social commun... ECblog
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This is a reply to # 1,498,789Here is the reason I created the group on FB:
1. The main purpose of the group is not to chat or discuss treatments, but to get an idea of how many of us there are in the world - right now - dealing with exfoliative cheilitis. Are we 25? 250? More? This is impossible to estimate using this forum where people come and go all the time, but it would be very easy using FB- we would actually get a number. This is the most important purpose of the group.
With that said, I also wanted to create another information channel, not necessarily for us who know our diagnos, but for the people still in the dark, searching for people in the same boat. Therefore I think EC should be present on all the biggest social media sites with massive amount of visitors every day.
/David
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This is a reply to # 1,498,801Advertisement
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I'd consider it yep. And I think it's a good idea. It took me ages to find this forum and to work out that I had "Exfoliative Cheilitis." Some people on here are negative to pretty much every idea or suggestion. Dunno why they bother...- Re: Would you JOIN the social commun... ab11747
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- Re: Would you JOIN the social commun... lipshitz
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This is a reply to # 1,499,665Ah, ok, I do see there is a secret option. I would do that, but wouldn't it defeat the purpose of trying to ascertain how many have the condition? There has to be a more anonymous social network in many languages for this (that also doesn't have invasive targeted advertising). I'll see what I find out there.- Re: Would you JOIN the social commun... lipshitz
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This is a reply to # 1,499,727I created a Twitter account just now. It may help with this project. Since I now control the domain http://twitter.com/peelinglips
there will be no spam advertising about BS products from that source like there is for the cheilitis page!
But some day maybe I can be at a place where I can promote a real cure there, which I would do often. Anyway, if you don't have a twitter account, it's easy to set it up, and as of now they have no invasive advertising.
As far as organization goes, you can send a message directly to me through my page (you have to follow me first), and I can post your findings anonymously so it wouldn't show up in your own feed. Otherwise, just create a separate account and "follow" me, and you won't have to do anything else.
If this gets big at all maybe we could agree to rotate the manager of the account to other members of the "group."
Peace and Solidarity, friends. Let's not abandon the fight.
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- Re: Would you JOIN the social commun... lipshitz
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This is a reply to # 1,499,745There are a lot of posts on Twitter of confused people with peeling lips if you do a search for it. - Re: Would you JOIN the social commun... ECblog
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This is a reply to # 1,499,745Advertisement
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A twitter account could also be a good idea, I'll look into that as soon as I have the time.
Great that you keep up the sense of positive vibe - as we all here now this condition is hard work to deal with on a daily basis, but it's important to maintain a positive focus.
/David
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This is a reply to # 1,498,961Alright, maybe I will try that then. I have been busy for the last week but I'll send out a notice if I make it secret.
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This is a reply to # 1,501,115Hi ,
Today i met one of the top dermitologists and she introduced a new cream and said to appy once every day and see results in 7 days, she suggested apply (BARIDERM ) cream as required, lets see....!1 week hope this cream works
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Anyways i would let you all know the result
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