Where have all the rosaceans gone?

[Guide]

The answer to the question is to social media platforms. 
What can you do to volunteer?

Watch this trailer (less than a minute)

Longer Version Below

This post is about rosacea and social media platforms where all the rosaceans have gone and is an in-depth deep dive into this subject. Before we look at some of the data on this it would be good to go back in time and look at the history of the internet and rosacea, before the advent of social media. * 

Sixteen years ago when the RRDi was founded by rosacea sufferers with the motive to form a grassroots patient advocacy group that could have a united voice to the medical community who at that time didn’t take any rosacea patient advocacy group for rosacea seriously because none existed. Does the medical community take seriously a united effort from any social media platform group on rosacea that is a grassroots patient advocacy group?  I will let you think about that question. 

There were two such organizations formed in 2004, one by David Pascoe (and others) and the other, the RRDi which involved myself (and others) who split into two camps. David Pascoe opted to using an html website for his non profit organization for rosacea and we opted for the Invision Power Board platform. David’s non profit, the Rosacea Research Foundation, was a similar grassroots organization that was more popular, raising $16K in a very short time and then quickly disbanded by the end of 2005, donating the entire money raised to the NRS, which was ironic, since both the RRDi and the RRF were formed because rosaceans wanted their own grassroots organization and were not happy with the NRS and its organization, how it was spending its donations, mostly on private contractors owned by one of the NRS board members, and very little on rosacea research.  But the glimmer of hope is that the RRF shows what can be done with a grassroots patient advocacy non profit organization. 

The RRDi software platform was Invision Power Board which evolved into the Invision Community.

The forum platform software was extremely popular back in 2004 and is still used today by many organizations and companies. 

The RRDi eventually hosted the entire website and forum on Invision Community servers. The RRDi continued to grow with members (1.3K) and small donations and over the course of almost seventeen years we have received around $15.5K which is around $900/year in donations. We did spend about $6K on education grants sponsored by Galderma and the rest spent to keep the website going and legally continue as a non profit with registration fees and published one edition of our print on demand journal. It does cost money to keep a non profit organization going, even if no one is receiving a salary, no employees and no payments to private contractors owned by one of the board members. We don’t do that. Everyone is a volunteer. Pro bono. 

Then over the years the members and posts have dropped to nearly zero. We know we have traffic to our website because Google Analytics shows we do, nearly 4K visit our website each month, but they do not engage. So what happened? Where have all the rosaceans gone?  Back in 2004 there were many volunteers and they were working hard to create a grassroots, rosacea patient advocacy non profit organization. Where are they now?

Around the same time the RRDi was formed, Zuckerberg began Facebook, a social media and social networking service, with a different but similar platform as the ‘forum’ style platform and Facebook took off and exceeded all expectations and became the number one social platform. Others followed, i.e., Instagram, Twitter, Reddit and that list goes on. 

According to Search Engine Journal, in 2020 Facebook has 2.45 billion users, Instagram 1 billion users, Reddit 430 million, Snapchat 360 million, Twitter 330 million users, Pinterest 320 million, LinkedIn 310 million. So let's analyze where the rosaceans are on these social media platforms and what they are doing. 

When you do a rosacea search on Facebook you can find where rosaceans have gone. The number one Facebook that comes up is the NRS with nearly 40K friends and 41K followers. 

This non profit organization for rosacea has spent 10% of its donations on rosacea research over a twenty year period. 60% of the donations are spent on two private contractors owned by one of the board members. The Board Members of this Non Profit Organization are NOT rosaceans, and are comprised of businessmen (three), dermatologists (two), one RN, and a medical editor. For More Information. This non profit is heavily sponsored by pharmaceutical companies which is shown on its website if you scroll towards the bottom you will see the following:

While this Facebook group is the most popular, do you consider this a grassroots patient advocacy group for rosacea or something else?

 

 

As far as known, the Rosacea Support Group is the next largest Facebook group with 15K followers and 14K likes. It states clearly that this is a non profit organization but there is absolutely no evidence that RSG is registered as non profit. This is David Pascoe's group and his website is making money because there are affiliate links and sponsors for rosacea treatments but there is no evidence that this group engages in any rosacea research or has any influence on the medical community. 

RosaceaFacts on Facebook has 18K followers and likes and is run by the pharmaceutical company Galderma. 

The Rosacea Spanish Facebook has 6K followers and nearly 6K likes. 

Rosacea Awareness says it is an actual 'community' and the official link is to StudyKIK.com which is a site for clinical trials. The about page at StudyKik says, "StudyKIK is the leading website where clinical trial companies list their studies and eager volunteers find them to sign up instantly." The Facebook ABOUT page doesn't explain who is running it but on the MORE INFORMATION link at the bottom of the page it links to its Instagram page that doesn't explain who this Facebook account belongs to but obviously it is somehow connected to StudyKik who say they are 'volunteers.' Nevertheless, 5.5K follow and like this Facebook Group. Do you think this social media 'community' has any influence on the medical community as a voice for rosaceans?  It has 13K followers and likes. 

If you know of any other rosacea Facebook groups which should be in this list, please find the reply button and let us know. 

While there are rosaceans obviously on Instagram, figuring out which one is the most popular is difficult to say the least. Some of the ones who come up in the search box are #rosacea, #rosácea, #rosaceatreatment,  #rosaceaskincare, and this list goes on and on. For example, the NRS has an account shown below: 

As previously mentioned about the NRS Facebook group and how this non profit represents businessmen and dermatologists who are the voice behind this organization and is not run by rosacea sufferers, apparently, the NRS Instagram isn't as popular with posts and followers as its Facebook group is.  If you know of an Instagram account that is more popular that should be mentioned, please find the reply button and let us know. There are rosaceans at Instagram but are any accounts representing rosacea sufferers as a united group that influences the medical community about rosacea? 

Reddit appears to be the more popular social media website for rosaceans. There are 'subreddits' that are specifically made up of rosaceans while there are other subreddits that discuss rosacea, i.e., r/SkincareAddiction (1.2m members), r/30PlusSkinCare (124K members), r/medical (63.8K members), r/Accutane (29.6K members), r/AusSkincare (27K members) and others but we will mention one rosacea subreddit below: 

You can see the number of members above in this subreddit and now lets try to figure out who runs this? Note below the results: 

 

Does this give you an idea of who is running this huge subreddit?  Is this a registered non profit organization? Is it run by businessmen or medical professionals? What credentials are behind the moderators?  Why do they hide behind cryptic display names?  This gives you an idea of where the rosaceans have gone and rosaceans love it this way, behind cryptic display names. Do you think that this subreddit rosacea group with 21K members have any influence on the medical community to find the cure for rosacea or engage in any rosacea research?  

 

Are there rosaceans on snapchat?  Did a search on 'stories' and got this result: 

Did a google search with no results either. So if you know if there are rosacea sufferers on snapchat, can you please find the reply button to this post and tell us what you know. 

Did a search on twitter with 'rosacea' and all sorts of 'tweets' come up but there isn't any one post that shows a united effort for rosaceans to come together into one cohesive patient advocacy group. Searched the 'National Rosacea Society' and discovered it has 3201 followers and 563 following on December 1, 2020  (which we mentioned about in Facebook and Instagram). Doesn't appear that there is any attempt with rosaceans to unite with twitter into one large group with a 'voice.' 

Did a search on Pinterest using the 'board' as the choice and got a number of 'boards' shown below or you can see for yourself by clicking here. 

The first one on the top left is Talonted Lex, a beauty blogger, who has rosacea and on Pinterest has 9.5K followers. The second one on the top row from the left is May Lindstrom Skin who has a  'lifelong battle with severe eczema and perioral dermatitis' with 2.6K followers at  Pinterest. The third one from the left top row is Clare Baucom who doesn't explain who she is but has 1.9K followers on her 'Rosacea Sensitive Skincare' and lots of over the counter treatments. This keeps on going but most of the 'boards' are selling over the counter treatments for rosacea. Do you know of any 'board' at Pinterest that is the voice of all rosacea sufferers in a patient advocacy united group that the medical community listens to?  

 

Did a search on LinkedIn and not much happening with rosaceans at this social media business connection site. Professor Tony Chu started a charity named the The Acne & Rosacea Association UK with 57 members. Rosacea Care, who offers treatments for rosacea, is also listed. PCA who also offers treatments for rosacea is listed with 600 members. Not much happening with rosacea patient advocacy movements at LinkedIn. 

Conclusion

This is an in-depth look done in December 2020 searching where all the rosaceans have gone and they are happy posting in the above social media groups and could care less if there is any movement to create a grassroots rosacea patient advocacy group like the RRDi. So if you are happy with what is currently happening with where all the rosaceans have gone, good for you.

Et Cetera

What is your idea of what a rosacea non profit should be doing?

Comparing Non Profit Organizations with their Mission

How Non Profits Work

Volunteering Benefits

Grassroots Rosacea Non Profit Organization

Reply to this Topic

There is a reply to this topic button somewhere on the device you are reading this post. 

* An article published in The Atlantic, WHY THE PAST 10 YEARS OF AMERICAN LIFE HAVE BEEN UNIQUELY STUPID by Jonathan Haidt confirms why rosaceans have left in a mass exodus over to social media. 

 

 

 

 

[Mistica]

Hello Brady,

Thank you for  this insightful video presentation, all your work, and efforts to  gain the attention of rosaceans. I feel all your years of hard work are  largely unrewarded, or even recognised.

I would be sad to see the RRDI close, and realise I (as a member) need to carry  a tiny portion of the blame if it does.

I loathe all the social media platforms that you have mentioned in the video. I find them difficult to navigate and   most posters  have little to offer in the way of anything remotely scientific, nor truly helpful. It is just a regurgitation of  superficial bandaid treatments. There are no archives full of information as can be found in the rosaceagroup.org, rosacea-support.org or perhaps to a lesser degree, the RRDI. Perhaps one of the reasons that the RRDI does not  retain the visitors it gets, is due to lack of extensive archives? I am only speculating.  With that said, the rosaceagroup.org is sadly lacking in active members now as well. Where have all the  science minded members gone? We used to have  really detailed discussions based on research which furthered our understanding of this rotten beast. I very much doubt all these members have reached remission. Have they moved to the pastures of sheep too? It is hard to imagine them thriving in such an environment.

I can't explain why old time members have moved there, but  with the younger generation, they probably just follow the flow and as you have clearly illustrated in the above video, they are fodder for  any company peddling products. 

I sound harsh, but I am a realist.

My professor mentor feels the answers to the complete rosacea/flushing puzzle are probably already out there, and it needs people with more time to sit down and  assemble  the pieces.

There are a number of  people who do achieve remission and maintain it, so  it can be done. Sub type two is  a much easier  beast to slay as you know. It is the flushing  type which proves itself to be a formidable opponent. 

I managed to reign in my  severe flushing, despite a number of specialists insisting nothing could be done. Yet I am a mere peasant in the world of science. 

My point being, if sessions of brain storming took place by actual scientists, surely this would further knowledge and understanding.

I'd like to see the scientists on the RRDI toss around some ideas and to form hypotheses. Given that the RRDI was formed to develop it's own research, why aren't they offering any thoughts? At least planting seeds for others to debate? Rosacea patients could then join in if they have anything to offer.

If this were happening on boards for  everyone to view, perhaps this activity would be seen as a ray of hope by the general members and would inspire them to donate?

 

Mistica

[Guide]

1 hour ago, Mistica said:

There are no archives full of information as can be found in the rosaceagroup.org, rosacea-support.org or perhaps to a lesser degree, the RRDI. Perhaps one of the reasons that the RRDI does not  retain the visitors it gets, is due to lack of extensive archives? I am only speculating.  Mistica

Hi Mistica, 

Thanks for your lovely post. Could you explain why you state 'perhaps to a lesser degree, the RRDi'?  Is it because of the total number of posts at RF and RS are greater than the number in the RRDi?

[Mistica]

Yes, total number of posts and  large subject matter. People sharing their experiences and  the discussions (at times) as to why a treatment is working or not working. Here in the RRDI there seems to be little of that. There are a number of studies in the archives, which is all well and good, but not actual discussions, which is a shame, given the fact  there are a large number of doctors and  a few scientists here. Perhaps they only have mild symptoms so they are not driven to  ponder the biology of rosacea in their spare time? I am speculating of course. 

[Guide]

10 minutes ago, Mistica said:

Yes, total number of posts and  large subject matter. People sharing their experiences and  the discussions (at times) as to why a treatment is working or not working. Here in the RRDI there seems to be little of that. There are a number of studies in the archives, which is all well and good, but not actual discussions, which is a shame, given the fact  there are a large number of doctors and  a few scientists here. Perhaps they only have mild symptoms so they are not driven to  ponder the biology of rosacea in their spare time? I am speculating of course. 

I see. It took nearly seventeen years to gather 45 medical professionals who have anything to do with rosacea into one medical advisory committee (consultants) and it was like pulling teeth because volunteering isn't on most individuals' plates these days. In order to allow their names to be put on the list they agreed to volunteer for only ten minutes a month if they have the time to do so. The one perk the RRDi has with this is we have their contact information and we can personally ask questions and usually they respond with email and allow us to post their response for them since, like most rosaceans today, everyone posts at social media and they don't post here at the RRDi. All this effort of gathering together the MAC and the 1.3K members is going up in smoke if the donations are not forthcoming to keep this effort active. I can't do this alone and I am seventy years old. The handwriting is on the wall, 'The RRDi is dying.' We need some young blood to take over. We can register the RRDi as a non profit in any state if that is needed, if we have the funds to register if that would help whoever takes over. Otherwise, there are some hoops that have to be done to dissolve the RRDi. 

[Mistica]

Yes, it is a very sad state of affairs. 

In my experience, doctors who are driven to find answers are usually functional medicine doctors, or people in related fields, such as RedVelvet, a member here. They look at the wider picture and often achieve pleasing results in many types of chronic disease, but  a few continue to elude them. Also,  in my experience, scientists are   usually keener to spend their spare time pondering a puzzle with lay people than physicians are. They have an innate curiosity and formulate a hypothesis based on real people's experiences. They don't mind a debate either. My professor mentors helped turn my severe flushing and health around, where as doctors seem out of their depth. Unfortunately neither mentor is in a position to be engaging in active rosacea research.

Maybe we can dig up some more scientists?

 

[Guide]

5 hours ago, Mistica said:

Maybe we can dig up some more scientists?

Wouldn't it be nice to have volunteers who would dig up some more scientists?  I dug up 45 medical professionals that have something to do with rosacea. So I should order the 'I dug up the RRDi MAC' Tee shirt, all 45 if them. 

[Teslasrevenge]

I've been casually searching around the internet about rosacea help, treatment, doctors, etc.  I have a doctor who is trying different things, he calls me his most stubborn case of it.  What's interesting here is that it reveals classic snake oil salesmen at their craft.  Facebook is a joke, so it does not surprise me that there are hidden agendas by the creators/moderators/admins of these different social media sites.  Preying on people with diseases.  How nice.  If I could help to actively pursue the cause and cure, I would do it, but where does one start?  Throwing money at every last person who has their hand out and a promise leads to an empty pocket and a broken heart. 

[Guide]

7 hours ago, Teslasrevenge said:

I've been casually searching around the internet about rosacea help, treatment, doctors, etc.  I have a doctor who is trying different things, he calls me his most stubborn case of it.  What's interesting here is that it reveals classic snake oil salesmen at their craft.  Facebook is a joke, so it does not surprise me that there are hidden agendas by the creators/moderators/admins of these different social media sites.  Preying on people with diseases.  How nice.  If I could help to actively pursue the cause and cure, I would do it, but where does one start?  Throwing money at every last person who has their hand out and a promise leads to an empty pocket and a broken heart. 

I understand your reluctance to part with a donation to those with their hand out. It is one of the reasons I was appalled at how the other non profits for rosacea spend their donations. All you do is check it out for yourself, using Form 990 and see how the other non profits for rosacea spend their money. The two other non profits in the USA are the NRS and the AARS. The Canadian non profit, ARSC, does not disclose how they spend their donations. Compare that with what the RRDi spends its donations on, right now keeping this website going by checking the Site Index, the forums, and the articles. We believe in transparency and disclose how we spend our funds on our financial page. I encourage you to visit the other rosacea non profits and see how they spend their donations. Furthermore, the RRDi is the only one founded by rosacea sufferers. We are similar to how the Erythromelagia Association spends its donations and is run by those suffering from erythromelagia.

[7Cecile7]

Hello Brady,

I wanted to offer some explanation as to why I've not been active on this forum. First of all it's the structure of a forum. Personally, I have a challenge navigating them. For me & how my brain works I just haven't done well with seeing/understanding how to navigate forums so I've not engaged in them very much. Unlike Reddit which I've recently joined for the reselling community posts I've never noticed RRDI to send you a thread that you've posted on directly to you like Reddit does, so I will click on the heading & see what was just written & then I'll respond, otherwise I don't go on to reddit & search etc.,. I don't understand how to navigate Reddit much either and it's not a priority. Visually too much going on. I am not on social media/FB much at all especially since my husband left our marriage unexpectedly a few years ago, but when we were together & I was dealing with a lot of other health issues & my parents health issues & focusing on him & his music career. I've had a lot of health issues & life losses that have eclipsed rosacea so that it fell to the bottom of the list. 

For me I've found that my acne rosacea is triggered by allergies & sensitivities that are odd so they wouldn't be easily caught. I had to eliminate these sources as much as possible, some of which are not always possible for example shopping in stores pre-pandemic my face would break out as I'm reactive to formaldehyde resin which is sprayed on a ton of items found in my fav TJ Maxx, Marshalls & Homegoods (especially) stores. I'd go out that day with a perfectly clear face & shop for several hours & end up with 4-6 rosacea pimples by the end of the night. A friend of mine joked that we should record it.

Wearing a surgical mask makes my face break out, yes the surgical ones, because they have some sort of chemical on them. Titanium dioxide, coco-betaine & prior even foods triggered it. I have to wash my face twice a day with Honest brand face cleanser as it is free of coco-betaine which is the main cleansing ingredient in all hand soaps, shampoos & cleansers. I use Dessert Essence Free (something) shampoo & conditioner because it is free of coco-betaine & I found two hand pump cleansers free of that ingredient as well. I use a handful of other skincare products (too many to list) including Renee' Rouleau's line which is fabulous, she has a acne spot treatment which will eliminate the red rosacea bumps overnight. I use titanium dioxide free makeup as well. 

Another odd thing is I can use this amazing lotions, creams on my face & it helps my face but if I put it on my neck it'll break out in hives so I'm still trying to discern which ingredient I'm allergic to now, it's coming down to aloe vera & rosemary as well as blue tansy. My body chemistry is constantly changing with some health issues leaving while others enter in, including new sensitivities that give me pseudo allergic reactions even affect my heart rhythm etc., and traditional doctors do not want to hear this type of thing so I just stay away from the docs, work with a great integrative nutritionist & my own research & live a life of continuous evolving experimentation.

I have my own website beingwellwithmichelle.com that I've not posted on in about 2 years nevermind engage on. I may get back to it this year but I"m not sure. I look at the photos of me on there & they were from 2012 or so & I don't recognize that sweet innocent 40 something. I had high hopes for my life/wellness coaching practice working with other high achieving women with chronic health challenges but due to the marriage ending & all that went with that I had to focus on my mindbodywellness & not on helping others.

So many things going on in my life just trying to survive & put myself & my self-care first has been my priority & now with the pandemic things are even more disjointed. I spent over 35 years trying to figure out my health challenges rosacea being the most obvious to others & the one that first came around age 20 when I got Lyme disease then disappeared & returned 20 plus years later & I'm 51 now & still am learning how it expresses itself in my body. For now I've got it under control which is nice. I take a mindbodyspirit approach combining a bunch of philosophies & a metaphysical approach to wellness too.

I hear these people with COVID-19 speak about "long haul" symptoms & that's been the story of my life since I got mono at age 15 but doctors looked at me like I was crazy. I've had 3/4's of the symptoms people have talked about COVID causing in all systems. I had Lyme disease as well yet it wasn't properly diagnosed. I got on doxycycline for the rosacea outbreak at age 20 & within a few months my neurological symptoms left. I had tested positive ANA factor, RH factor & had signs of infection but back in the late 80's no one was putting it all together with Lyme as they do now. 

To be honest, I had to take a giant step back & just try to live & do & be instead of constantly focusing on what is wrong with me & that included stepping away from the rosacea forum among many others. 

I started reselling clothes online & that has been a nice distraction from illness & dysfunction. I want to still help others including sharing my experiences with rosacea but I'm not sure exactly what that's going to look like. It seems each year when I think I'm going to get off of SSDI & work again another life or health tragedy strikes & I'm just at that point of trying to live under the radar. I'm literally alone in my condo daily & haven't seen anyone in a year except for a handful of people at a distance, grocery shopping, dropping off things to my Dad etc., I've not even been able to see my Mom due to her being in a nursing home facility. I got sick last year with a respiratory virus that I've still not fully recovered from & that was last Dec-this April. So I got a head start on the quarantine.

So I apologize for not being more active here or anywhere actually, but to be honest there have been so many other things going on that I've just not wanted to focus on illness & issues whenever I don't have to. I hope you can understand. 

 

[Guide]

On 12/26/2020 at 10:12 AM, 7Cecile7 said:

Hello Brady,

I wanted to offer some explanation as to why I've not been active on this forum. First of all it's the structure of a forum. Personally, I have a challenge navigating them. For me & how my brain works I just haven't done well with seeing/understanding how to navigate forums so I've not engaged in them very much. Unlike Reddit which I've recently joined for the reselling community posts I've never noticed RRDI to send you a thread that you've posted on directly to you like Reddit does, so I will click on the heading & see what was just written & then I'll respond, otherwise I don't go on to reddit & search etc.,. I don't understand how to navigate Reddit much either and it's not a priority. Visually too much going on. I am not on social media/FB much at all especially since my husband left our marriage unexpectedly a few years ago, but when we were together & I was dealing with a lot of other health issues & my parents health issues & focusing on him & his music career. I've had a lot of health issues & life losses that have eclipsed rosacea so that it fell to the bottom of the list. 

For me I've found that my acne rosacea is triggered by allergies & sensitivities that are odd so they wouldn't be easily caught. I had to eliminate these sources as much as possible, some of which are not always possible for example shopping in stores pre-pandemic my face would break out as I'm reactive to formaldehyde resin which is sprayed on a ton of items found in my fav TJ Maxx, Marshalls & Homegoods (especially) stores. I'd go out that day with a perfectly clear face & shop for several hours & end up with 4-6 rosacea pimples by the end of the night. A friend of mine joked that we should record it.

Wearing a surgical mask makes my face break out, yes the surgical ones, because they have some sort of chemical on them. Titanium dioxide, coco-betaine & prior even foods triggered it. I have to wash my face twice a day with Honest brand face cleanser as it is free of coco-betaine which is the main cleansing ingredient in all hand soaps, shampoos & cleansers. I use Dessert Essence Free (something) shampoo & conditioner because it is free of coco-betaine & I found two hand pump cleansers free of that ingredient as well. I use a handful of other skincare products (too many to list) including Renee' Rouleau's line which is fabulous, she has a acne spot treatment which will eliminate the red rosacea bumps overnight. I use titanium dioxide free makeup as well. 

Another odd thing is I can use this amazing lotions, creams on my face & it helps my face but if I put it on my neck it'll break out in hives so I'm still trying to discern which ingredient I'm allergic to now, it's coming down to aloe vera & rosemary as well as blue tansy. My body chemistry is constantly changing with some health issues leaving while others enter in, including new sensitivities that give me pseudo allergic reactions even affect my heart rhythm etc., and traditional doctors do not want to hear this type of thing so I just stay away from the docs, work with a great integrative nutritionist & my own research & live a life of continuous evolving experimentation.

I have my own website beingwellwithmichelle.com that I've not posted on in about 2 years nevermind engage on. I may get back to it this year but I"m not sure. I look at the photos of me on there & they were from 2012 or so & I don't recognize that sweet innocent 40 something. I had high hopes for my life/wellness coaching practice working with other high achieving women with chronic health challenges but due to the marriage ending & all that went with that I had to focus on my mindbodywellness & not on helping others.

So many things going on in my life just trying to survive & put myself & my self-care first has been my priority & now with the pandemic things are even more disjointed. I spent over 35 years trying to figure out my health challenges rosacea being the most obvious to others & the one that first came around age 20 when I got Lyme disease then disappeared & returned 20 plus years later & I'm 51 now & still am learning how it expresses itself in my body. For now I've got it under control which is nice. I take a mindbodyspirit approach combining a bunch of philosophies & a metaphysical approach to wellness too.

I hear these people with COVID-19 speak about "long haul" symptoms & that's been the story of my life since I got mono at age 15 but doctors looked at me like I was crazy. I've had 3/4's of the symptoms people have talked about COVID causing in all systems. I had Lyme disease as well yet it wasn't properly diagnosed. I got on doxycycline for the rosacea outbreak at age 20 & within a few months my neurological symptoms left. I had tested positive ANA factor, RH factor & had signs of infection but back in the late 80's no one was putting it all together with Lyme as they do now. 

To be honest, I had to take a giant step back & just try to live & do & be instead of constantly focusing on what is wrong with me & that included stepping away from the rosacea forum among many others. 

I started reselling clothes online & that has been a nice distraction from illness & dysfunction. I want to still help others including sharing my experiences with rosacea but I'm not sure exactly what that's going to look like. It seems each year when I think I'm going to get off of SSDI & work again another life or health tragedy strikes & I'm just at that point of trying to live under the radar. I'm literally alone in my condo daily & haven't seen anyone in a year except for a handful of people at a distance, grocery shopping, dropping off things to my Dad etc., I've not even been able to see my Mom due to her being in a nursing home facility. I got sick last year with a respiratory virus that I've still not fully recovered from & that was last Dec-this April. So I got a head start on the quarantine.

So I apologize for not being more active here or anywhere actually, but to be honest there have been so many other things going on that I've just not wanted to focus on illness & issues whenever I don't have to. I hope you can understand. 

 

Cecile,

Really appreciate your post. Your plate is obviously full and I understand. Hang in there and wish you much success with your website. If you have a diagnosis with rosacea you may qualify to serve on the board of directors and you can work on improving the RRDi website since I have made this run for seventeen years and would love to hand the baton to someone younger. It would be a shame for the RRDi to dissolve but the handwriting is on the wall. Interested in running the RRDi the way you think it should be run?

[Guide]

On 12/26/2020 at 10:12 AM, 7Cecile7 said:

Hello Brady,

I wanted to offer some explanation as to why I've not been active on this forum. First of all it's the structure of a forum. Personally, I have a challenge navigating them. For me & how my brain works I just haven't done well with seeing/understanding how to navigate forums so I've not engaged in them very much. Unlike Reddit which I've recently joined for the reselling community posts I've never noticed RRDI to send you a thread that you've posted on directly to you like Reddit does, so I will click on the heading & see what was just written & then I'll respond, otherwise I don't go on to reddit & search etc.,. I don't understand how to navigate Reddit much either and it's not a priority. Visually too much going on. I am not on social media/FB much at all especially since my husband left our marriage unexpectedly a few years ago, but when we were together & I was dealing with a lot of other health issues & my parents health issues & focusing on him & his music career. I've had a lot of health issues & life losses that have eclipsed rosacea so that it fell to the bottom of the list. 

For me I've found that my acne rosacea is triggered by allergies & sensitivities that are odd so they wouldn't be easily caught. I had to eliminate these sources as much as possible, some of which are not always possible for example shopping in stores pre-pandemic my face would break out as I'm reactive to formaldehyde resin which is sprayed on a ton of items found in my fav TJ Maxx, Marshalls & Homegoods (especially) stores. I'd go out that day with a perfectly clear face & shop for several hours & end up with 4-6 rosacea pimples by the end of the night. A friend of mine joked that we should record it.

Wearing a surgical mask makes my face break out, yes the surgical ones, because they have some sort of chemical on them. Titanium dioxide, coco-betaine & prior even foods triggered it. I have to wash my face twice a day with Honest brand face cleanser as it is free of coco-betaine which is the main cleansing ingredient in all hand soaps, shampoos & cleansers. I use Dessert Essence Free (something) shampoo & conditioner because it is free of coco-betaine & I found two hand pump cleansers free of that ingredient as well. I use a handful of other skincare products (too many to list) including Renee' Rouleau's line which is fabulous, she has a acne spot treatment which will eliminate the red rosacea bumps overnight. I use titanium dioxide free makeup as well. 

Another odd thing is I can use this amazing lotions, creams on my face & it helps my face but if I put it on my neck it'll break out in hives so I'm still trying to discern which ingredient I'm allergic to now, it's coming down to aloe vera & rosemary as well as blue tansy. My body chemistry is constantly changing with some health issues leaving while others enter in, including new sensitivities that give me pseudo allergic reactions even affect my heart rhythm etc., and traditional doctors do not want to hear this type of thing so I just stay away from the docs, work with a great integrative nutritionist & my own research & live a life of continuous evolving experimentation.

I have my own website beingwellwithmichelle.com that I've not posted on in about 2 years nevermind engage on. I may get back to it this year but I"m not sure. I look at the photos of me on there & they were from 2012 or so & I don't recognize that sweet innocent 40 something. I had high hopes for my life/wellness coaching practice working with other high achieving women with chronic health challenges but due to the marriage ending & all that went with that I had to focus on my mindbodywellness & not on helping others.

So many things going on in my life just trying to survive & put myself & my self-care first has been my priority & now with the pandemic things are even more disjointed. I spent over 35 years trying to figure out my health challenges rosacea being the most obvious to others & the one that first came around age 20 when I got Lyme disease then disappeared & returned 20 plus years later & I'm 51 now & still am learning how it expresses itself in my body. For now I've got it under control which is nice. I take a mindbodyspirit approach combining a bunch of philosophies & a metaphysical approach to wellness too.

I hear these people with COVID-19 speak about "long haul" symptoms & that's been the story of my life since I got mono at age 15 but doctors looked at me like I was crazy. I've had 3/4's of the symptoms people have talked about COVID causing in all systems. I had Lyme disease as well yet it wasn't properly diagnosed. I got on doxycycline for the rosacea outbreak at age 20 & within a few months my neurological symptoms left. I had tested positive ANA factor, RH factor & had signs of infection but back in the late 80's no one was putting it all together with Lyme as they do now. 

To be honest, I had to take a giant step back & just try to live & do & be instead of constantly focusing on what is wrong with me & that included stepping away from the rosacea forum among many others. 

I started reselling clothes online & that has been a nice distraction from illness & dysfunction. I want to still help others including sharing my experiences with rosacea but I'm not sure exactly what that's going to look like. It seems each year when I think I'm going to get off of SSDI & work again another life or health tragedy strikes & I'm just at that point of trying to live under the radar. I'm literally alone in my condo daily & haven't seen anyone in a year except for a handful of people at a distance, grocery shopping, dropping off things to my Dad etc., I've not even been able to see my Mom due to her being in a nursing home facility. I got sick last year with a respiratory virus that I've still not fully recovered from & that was last Dec-this April. So I got a head start on the quarantine.

So I apologize for not being more active here or anywhere actually, but to be honest there have been so many other things going on that I've just not wanted to focus on illness & issues whenever I don't have to. I hope you can understand. 

 

Cecile, 

Thanks for you post. Obviously rosaceans don't like forum style platform and prefer social media since that is why I made this post and video. I am so used to it and the similar forum at RF that it is second nature to me. I find social media platform not to my liking. I try to navigate Facebook and Reddit but just can't understand why rosaceans prefer it but such is the nature of humans. 

I understand you have limitations and appreciate your health is a difficult struggle. If you can think of something you would like to do for our non profit, I am all ears to find something you can do. For example, since you don't social media (I feel the same way you do about social media), you do mention you use Reddit some, could you be a moderator at our Reddit account since I don't like handling that job at all at Reddit and sure could use the help? If not, try to think of something. My recommendation is to setup your own rosacea blog which is free, which the RRDi sponsors, and you can learn how to do this by reading this post. Or another option is simply to post in our community support forum and stay in that category of our forum. If you can post some you may win a free jar of the ZZ cream!

[Guide]

"Social media has an influence on acne treatment..."

Cureus. 2022 Mar; 14(3): e23169.
The Influence of Social Media on the Treatment of Acne in Saudi Arabia
Monitoring Editor: Alexander Muacevic and John R Adler
Reem K Bahaj, Zahraa H Alsaggaf, Mohammed H Abduljabbar, and Jehad O Hariri