Jump to content
Sign in to follow this  
Admin

Where have all the rosaceans gone?

Recommended Posts

That has been my question for a number of years when I noticed no activity here at the RRDi, even though having over 1200 members, hardly anyone posts. I have thought during this time obviously rosaceans prefer social media over the forum style posting that has been around for twenty years, which doesn't have the user experience they are accustomed to using social media platforms. I have been browsing and posting a little at Facebook, Reddit, and Twitter and found that the level of education about rosacea is paltry and mostly these groups of rosaceans are into horse paste. They feel very comfortable showing horrible photos of their rosacea which I find really ironic since I heard so many complaints about joining the RRDi and filling out contact information (so we dropped the requirement and only require an email address). The lack of knowledge about rosacea in these social media groups and the spam posts allowed for all sorts of treatment for rosacea, not to mention the advertising, to me is a sad choice rosaceans have made instead of joining together in to a non profit organization for patient advocacy. At least I know where the rosaceans have gone. Very sad. 

Share this post


Link to post
Share on other sites

They need to be educated I think.

Though thinking more about that. Who can say that have a solution for cure which will help for sure.

I guess many of them. But when you trying there cure it mostly doing nothing for you.

There also products, treatments or activities that are making our ailment worse. And again you cannot be sure if something will help you or make it worse.

 

Share this post


Link to post
Share on other sites
4 hours ago, RedMage said:

They need to be educated I think.
Though thinking more about that. Who can say that have a solution for cure which will help for sure.
I guess many of them. But when you trying there cure it mostly doing nothing for you.
There also products, treatments or activities that are making our ailment worse. And again you cannot be sure if something will help you or make it worse.

 

Thanks for you post. That is what the RRDi is all about, a huge database of rosacea information to educate rosaceans. The treatments that don't work need to be flagged by posting a user experience. A treatment that does works needs to be shared. The RRDi has the means to contact any member by email address to confirm that the user is an actual rosacea sufferer and if the poster doesn't respond to the inquiry then the user can be banned. This isn't being done in rosacea groups on Facebook, Twitter or other social media (the posts could be spam and very little is being done to prevent spam). The RRDi has safeguards in place to prevent spammers and trollers who prey on rosacea sufferers. 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Sign in to follow this  

×
×
  • Create New...