Where have all the rosaceans gone?

[Guide]

Updated this post in December 2020 with a Video, so please click here to view.

Below is what I wrote in 2019. I continue to use this thread and posted on February 2, 2021, Groundhog Day, an update even though the link to the video/post on this subject above has a lot of information on this subject especially for those of you who don't like to read and love videos. For those of you who still read, you may find this thread interesting. If you do, could you be gracious and post your comment in this thread?  If you scroll through the thread you will see my more recent thoughts on this subject and possibly some other rosaceans might add their thoughts, but gaining the trust of rosaceans has now proved to be a daunting task, just to get their trust to post on our website. 

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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. 

[RedMage]

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.

 

[Guide]

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. 

[Guide]

This thread discusses the original thought of rosaceans using the RRDi website which as of this date is near 1.4K members who don't post or engage with one another or bother to post even a 'thank you' for the rosacea data on this website, when we know that rosaceans visit our website to glean information because Google Analytics shows we have around 4K visitors at our website each month so I have been monitoring what has happened and posted the WHERE HAVE ALL THE ROSACEANS GONE? video/post mentioned in the first post of this thread. 

Just noticed that this is happening all over the internet and according to Jason Kottke he has noticed the same thing happening to his website and commented on this phenomenon occurring all over the web:  

"If you ask around to the creators of other established independent sites on the web (and I have talked to many of them), you’ll hear that traffic and display ad revenue have been falling for the last few years. Many factors have contributed — Facebook, readers switching to mobile, the rise of apps, social overtaking search for discovery, ad blockers, Google Reader’s shutdown, VC money flooding into online media — and smaller sites without dedicated content marketing and mobile/social development teams can’t keep up. Other strategies are necessary." kottke.org memberships

Probably the word phenomenon isn't the correct word since Jason and I agree so probably a better word for this is evolution, not in the biologic sense but in the social sense. What I can add to all this is that rosaceans in general are so skeptical of what is on the internet that they simply don't trust the data, the fake news issue. A related post is the butterfly effect in rosacea post. 

I recently am engaging with a volunteer who offers to assist in our GoogleAds and Google Analytics accounts through an organization called VolunteerMatch and she doesn't trust giving our non profit organization her mailing address yet she expects us to hand over access to our Google accounts. This is a typical example. Another is the quandary of this younger generation who wants transparency and at the same time privacy which you simply can't have both at the same time, there has to be a balance in having both. I wrote about this at this post. An example is an online bank. You want to trust the bank with your personal information at the same time you want privacy. However, the bank won't let you engage unless you reveal your identity. The same is true when engaging with a non profit for rosacea, no matter what non profit you are dealing with. The difference is, what is the non profit doing with your personal data? What is the privacy policy?

In the media news as of this date is the battle Facebook is waging with Apple over Apple's proposed policy of disclosing what each app in its store does with your personal data when using any app. Facebook doesn't like what Apple is doing but the facts show and Apple is on top of this that users of the internet are not happy with how the Big Tech companies are using their personal data.  

The hypocrisy of all this is that rosaceans have no qualms giving out their personal information to Facebook or Reddit, or other social media platform, even posting photos of their rosacea!  What are your thoughts on all this?

[NCgirl]

I'm new here as of today and wondered why there were so few people posting here. There is a VAST amount of rosacea content here and I thank you for providing it. I signed up via Apple precisely because of the privacy and anonymity aspect. No way do I want to get medical advice via social media platforms. 

[Guide]

On 4/19/2021 at 8:20 PM, NCgirl said:

I'm new here as of today and wondered why there were so few people posting here. There is a VAST amount of rosacea content here and I thank you for providing it. I signed up via Apple precisely because of the privacy and anonymity aspect. No way do I want to get medical advice via social media platforms. 

Welcome NCgirl to the RRDi. 

If you like videos, there is a video explaining where all the rosaceans have gone and an updated post on this subject. I have tried to encourage engagement and posting but rosaceans have changed in their mindset and for some reason prefer social media platforms to post about their rosacea rather than the forum style platform that we have been using since 2004, the Invision Community. We are rosaceans and have been established since 2004 and have rosacea data in logical categories in our member forum. If you need any assistance, please ask. 

By the way, since you posted you have extended your active member status one month! And you are the winner of the ZZ cream for the month of April! However, because you are the most anonymous by registering with Apple, we have no way of shipping you a jar. But at least you are recognized as the best poster in April. Congratulations!