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Final Appeal


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Watch this video to understand the final appeal. After you have seen this video, find the REPLY TO THIS TOPIC button or the QUOTE button (depending on your device, just keep scrolling till you find either button) to add your comment or question.  

If you want to keep your privacy, simply type in a cryptic display name so no one knows who you are and post!  It is free!

We started a subscription based member forum on February 10, 2022 asking for a dollar a month donation to keep our non profit organization for rosacea patient advocacy going. You can review a history of all the number of members who joined the RRDi month by month since 2006 by clicking on this link. We have had to change this to a minimum of $2/month since the PayPal fee is 51 cents which only leaves the RRDi with 49 cents (this makes PayPal doing better than the RRDi). You should try putting a 501 c 3 non profit rosacea patient advocacy grassroots organization together and see if you can get donations. It is like pulling teeth. Rosaceans simply don't want to unite together to do anything but rant in their favorite rosacea social media group. Try to get your rosacea social media group to unite on anything. Well, this is our last final appeal. 

If you have a comment, please find the REPLY TO THIS TOPIC button or the 'quote' button and hide yourself behind a cryptic display name and comment something. 

 

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  • 1 month later...

Hi, I have just come across this forum today (via the following page: https://rosacea-support.org/book-reviews#rosaceadiet) and became quite interested in the community. In terms of what the RRDI stands for today (this being patient-led and supported): the mission sounds great and quite admirable. As someone who is in my early 30's and got properly assessed and diagnosed with rosacea just back in 2017... I find the condition does not get nearly enough attention (especially considering that there is mild research that had taken place on important topics such as the possibility of a link between rosacea and autoimmune conditions: https://www.dermatologytimes.com/view/more-evidence-rosacea-autoimmune-link).

This being said, as a new member it seems there are two main things missing: lack of awareness of the organization and therefore, lack of engagement. The first issue might be solved by collaboration with other grass-roots groups in either adjacent / related conditions or another dermatological condition of high prominence (for example, atopic dermatitis has been quite popular in recent years). The vehicle for collaboration and engagement could be as simple as social media (posting of recent articles on either topic and soliciting feedback that way). 

Thanks again for keeping this community alive. It is impressive to learn that RRDI has been going on since 2004 and I hope it will remain so. This condition is truly under-represented but the last thing patients need is another big group (such as the aforementioned NRS and AARS) that simply unites 'thought leaders' (in this case, physicians with clout) and the pharmaceutical manufacturers.

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  • Root Admin
5 hours ago, ak5790 said:

Hi, I have just come across this forum today (via the following page: https://rosacea-support.org/book-reviews#rosaceadiet) and became quite interested in the community. In terms of what the RRDI stands for today (this being patient-led and supported): the mission sounds great and quite admirable. As someone who is in my early 30's and got properly assessed and diagnosed with rosacea just back in 2017... I find the condition does not get nearly enough attention (especially considering that there is mild research that had taken place on important topics such as the possibility of a link between rosacea and autoimmune conditions: https://www.dermatologytimes.com/view/more-evidence-rosacea-autoimmune-link).

This being said, as a new member it seems there are two main things missing: lack of awareness of the organization and therefore, lack of engagement. The first issue might be solved by collaboration with other grass-roots groups in either adjacent / related conditions or another dermatological condition of high prominence (for example, atopic dermatitis has been quite popular in recent years). The vehicle for collaboration and engagement could be as simple as social media (posting of recent articles on either topic and soliciting feedback that way). 

Thanks again for keeping this community alive. It is impressive to learn that RRDI has been going on since 2004 and I hope it will remain so. This condition is truly under-represented but the last thing patients need is another big group (such as the aforementioned NRS and AARS) that simply unites 'thought leaders' (in this case, physicians with clout) and the pharmaceutical manufacturers.

Thanks for your insight into all this. Very few, as you have pointed out, are motivated to express any thought on this subject. The RRDi has social media accounts. Would you like to volunteer to moderate and manage one or more of them?  

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  • 1 month later...
  • Guests
Guest Jennifer

I have rosacea on my nose.  I have had it for 3 years, with little notice, but now it is getting really bad with bigger pores and bumps getting bigger and bigger on top and sides of my nose.  I have taken the  2 prescription medications recommended with poor results.  I have had it scraped 1 time 2 years ago but it did nothing.  I have alcohol a couple times a month.  Does anyone know what can slow down the process on the nose please?

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  • Administrators
On 10/10/2021 at 9:22 AM, Guest Jennifer said:

I have rosacea on my nose.  I have had it for 3 years, with little notice, but now it is getting really bad with bigger pores and bumps getting bigger and bigger on top and sides of my nose.  I have taken the  2 prescription medications recommended with poor results.  I have had it scraped 1 time 2 years ago but it did nothing.  I have alcohol a couple times a month.  Does anyone know what can slow down the process on the nose please?

first you stop consuming alcohol completely and see the result after one month. I am not saying that alcohol is causing your rosacea getting worse but sometimes it happens that any trigger which causes flare-ups, if we consume them only once would immediately cause flare-ups. This is only to see whether alcohol is your trigger or not and please share your results. 

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  • Root Admin
23 hours ago, Guest Jennifer said:

I have rosacea on my nose.  I have had it for 3 years, with little notice, but now it is getting really bad with bigger pores and bumps getting bigger and bigger on top and sides of my nose.  I have taken the  2 prescription medications recommended with poor results.  I have had it scraped 1 time 2 years ago but it did nothing.  I have alcohol a couple times a month.  Does anyone know what can slow down the process on the nose please?

If you have been diagnosed with Phenotype 5, it usually responds to treatment quite well. We have a list of treatment options to consider listed in this post which requires you join the RRDi as an active member to view. Have you been diagnosed with Phenotype 5? What 2 prescription treatments have you used?

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  • 4 months later...
  • Root Admin
On 10/10/2021 at 9:22 AM, Guest Jennifer said:

I have rosacea on my nose.  I have had it for 3 years, with little notice, but now it is getting really bad with bigger pores and bumps getting bigger and bigger on top and sides of my nose.  I have taken the  2 prescription medications recommended with poor results.  I have had it scraped 1 time 2 years ago but it did nothing.  I have alcohol a couple times a month.  Does anyone know what can slow down the process on the nose please?

We do have a post on alcohol and rosacea but you have to register and become a member to view the post. If you use our search box on the home page at the top and type in 'alcohol' you can read a list of posts on this subject which are numerous and you could search through them but again, you need to register an account and become a member to view most of these posts since guests are only allowed to view a small percentage of our rosacea data. 

Click here for a blurb about our post on alcohol and rosacea

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