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Guide

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  1. 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?

  2. 2 hours ago, Miss said:

    Is green tea a trigger?  I drink a lot every day.  I don't seem to notice a difference after I drink it.  Could it just be affecting my baseline redness?

    Green tea hasn't been on an rosacea trigger list. What is on most rosacea trigger lists is HOT BEVERAGES may cause a flush, whether it is green tea, black tea, white tea, coffee, hot water, etc. 

    FOR MORE INFORMATION

  3. 11 hours ago, Miss said:

    I'm trying to activate my account.  Any help?

    If you are a RRDi member, you need to login to your account. Then simply post anywhere guests are able to post, like this thread where you asked this question. That reactivates your account. Once you are reactivated, under your display name it shows 'Active Member.' This gives you 30 days of access to our website where guests are restricted. If you haven't posted in the last thirty days your account is then deactivated. Repeat the process to re-activate your account. 

    If you remember the email address you used to register your account but forgot the password, use the forgot password tool to reactivate your account: 

    https://irosacea.org/lostpassword/

    If you don't remember your login credentials, our volunteers can assist. Use the contact form and give us what you remember you used to register your account, i.e., your display name?  We can then reset your password for you if we can figure out what EMAIL you used to register your account. 

     

  4. Just saw a new page on the NRS website designated, 'key staff' and you can see a screen shot below: 

    Screen Shot 2021-09-02 at 7.41.26 AM.png

    If you will note in the above paragraph, Mr Huff is stated as 'president of the Glendale Communications Group, which provides infrastructure and personnel for for the NRS program services at no cost to its members.' If this is correct, why do the past 22 years of public Form 990s (1998 thru 2019) show that over $10 million of the donations to the NRS have been spent on private contractors that are owned by Mr. Huff, including Glendale Communications Group? For example, in 2019 the NRS spent $285,871 on 'private contractors' including Glendale Communications Group which happens to be 94% of the donations given to the NRS in 2019. If this is 'no cost to its members' then why report this expense on Form 990 for 2019?  In the previous year, 2018, the NRS spent $432,408 on private contractors, one of which is Glendale Communications Group, which happens to be 93% of the total donations given to the NRS in 2018.

    For a complete list of these Form 990s click here

    For a breakdown of how the NRS spends its donations click here

  5. 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?  

  6. Every dermatological disease assessed had a significant increase in TME when compared to the prior year. This increase was most significant for acne vulgaris (808%), psoriasis (792%), malignant skin neoplasms (716%), atopic dermatitis (609%), rosacea (566%) and contact dermatitis (529%). 

    Published online 2021 Aug 19. doi: 10.1016/j.jid.2021.07.109

    LB767 A multicenter analysis of patients using telemedicine for dermatological conditions during the COVID-19 pandemic

  7. You may be having issues trying to navigate our website using a mobile device so here is a helpful tutorial to find Rosacea Topics. Watch Video

    Step one - Finding the Menu on the Home page (iOS - hopefully Android users are similar) - Look for the three bars top right corner (click): 

    homepage.png

    You should then see the following menu: 

    menu.png

    Just under the HOME button find the NAVIGATOR button and click on it and you should see the following menu: 

    navigator.png

    The first word 'Navigator' is simply the title of this menu (don't click on it). The menu choices are now shown below this word, 'Navigator,' and you should begin scrolling down till you see the following: 

    nav-rosaceatopics.png

    The menu button ROSACEA TOPICS is the second to the last choice. Click on ROSACEA TOPICS which brings you to the following screen: 

    rosaceatopics.png

    You may want to turn your mobile device horizontally to view the videos and subforums and scroll down to see all the choices: 

    horizontal.png

    Now you can view the subforums but you are not allowed to enter a subforum without being a member of the RRDi. Membership is free and all you do register and then you can view over 7K posts and over 5.4K rosacea topics. Learn more. Hope this helps mobile device users on how to navigate our website. If you have questions, find the reply to this topic button and ask. 

  8. A novel topical consisting of 15% Azelaic Acid and 1% Dihydro Avenanthramide D for rosacea is mentioned in a clinical paper posted in our member forum at this link.

    You will need to join the RRDi to view this post. Membership is free. 

    We happen to have the MOST private rosacea forum on the internet, if you join using Sign in with Apple and use Apple's Hide My Email. Android users can still join as well as Windows users are welcome. 

  9. 320px-Grapefruits_-_whole-halved-segments.jpg

    An article published at mgblifestyle, discusses 'cold and formaldehyde-containing foods' as well as 'a pretty fancy-sounding protein' (actually a couple of fancy sounding proteins) that 'sets off a chain reaction that ultimately results in the release of histamines and cathelicidins by your skin's immune system.' The two proteins discussed in the article are transient receptor potential vanilloid 4 (TRPV4) and transient receptor potential alkyrin 1 (TRPA1). 

    New Research Shows How Certain Foods & Drinks Affect Rosacea, Alexandra Engler, mgblifestyle

    Grapefruit image courtesy of Wikimedia Commons

  10. Received the 2019 Form 990 from the AARS. Total revenue received $258,366. Who contributed most of the revenue? The 'skin industry.'

    GALDERMA LABORATORIES L.P. $87.5K
    LA ROCHE POSAY $15K
    ORTHO DERMATOLOGICS $35K
    SOL-GEL TECHNOLOGIES INC. $15K
    SUN PHARMACEUTICALS $36K
    ALMIRALL, LLC (FORMERLY AQUA PHARMA) $35K
    BOTANIX PHARMACEUTICALS $5K
    EPI HEALTH, LLC $5K

    Total donations from the skin industry is $233.5K. The AARS was refunded one of the grants given out last year in the amount of $10K and also received $10,150 in membership dues from dermatologists.  See below: 
    AARS2020GrantRefund.png

    What did the AARS spend most of its donations on? Again, the largest amount was on 'Conferences, conventions, and meetings' in the amount of $167,836. Two other large expenses was $48K on 'management' and $12,280 on 'website expenses.' See below: 

    AARS2020Expenses.png

    Is this the way you think a non profit organization for rosacea should be run?  If you are a dermatologist it seems appropriate to run this non profit the way it is run. However, if you are a rosacea sufferer, is this the rosacea non profit organization you want to support?  Why should there be a rosacea non profit run by rosaceans?

    You can read the Form 990 below: 

    AARS-2020Form990.pdf
     

    
    

     

    
    
  11. Received the 2019 Form 990 from the AARS. Total revenue received $195,638 and here is the breakdown of the top contributors who donate at least $5K: 

    ACLARIS THERAPEUTICS $10K
    CUTANEA LIFE SCIENCES (NOW OWNED BY BIOFRONTERA) $35K
    CASSIOPEA S.P.A. $10K
    FOAMIX PHARMACEUTICALS $10K
    GALDERMA LABORATORIES L.P. $50K
    RODAN AND FIELDS, LLC $35K
    THE PROACTIV COMPANY $35K

    Total from 'skin industry' $185K

    It would be safe to say that the vast majority of donations are from the 'skin industry.'  In addition to this, $10,450.00 revenue came from membership dues (dermatologists). 

    It would be prudent to note that there is little, if any, public support donations to the AARS. This organization operates more like a 501 6 c which is a business league. 

    What did the AARS spend most of the 'donations' on? $234,961 on "Conferences, conventions, and meetings."  You ask, how can the AARS spend more than it received in revenue? Answer: carry over assets. One expense worth noting is how the AARS spent $3,830.00 on its website. Here is a screen shot of all the expenses: 

    AARS2019Expenses.png

    The AARS did spend $40K on research grants in 2019 and you can review below who received the money: 

    AARS2019Grants.png

    Your can read the form 990 yourself below: 

    AARS-2019-Form990.pdf

  12.  

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    Members Have Access To Way More Rosacea Information

     

  13. On 6/19/2021 at 1:54 AM, Liesle said:

    Good day. I am looking for people in preferably Port Elizabeth, South Africa to try 100% natural products I used it for my rosacea. I am not on Facebook. I can send a before and a recent picture.

    Kind regards

    Liesle

     

    Hi Liesie, 
    Welcome to the RRDi. I recommend you try posting in natural treatments in the non prescription member forum which is shown below in this category:

    Forum Home > Forums > Member Forum > Rosacea Topics > Non Prescription > Natural Treatments 

    You will find a number of posts on this subject that may be of interest to you. If you are recommending your own natural products, we do allow members to ask you about your products for rosacea if that is what you are referring to, which you can reply to but the purpose of the RRDi is to help rosaceans. If they are not your own products, instead, natural products for rosacea you have found then that is the spirit we need in our community. Rosaceans helping rosaceans. The purpose of the RRDi is not to profit from other RRDi members, and instead encourages community support. This is a grassroots, non profit, patient advocacy organization for rosacea sufferers. 

     

  14. 1 hour ago, ElaineA said:

    2 studies, one on hot coffee and one on hot tea, both alleged to cause or trigger rosacea or flushing.   Neither study tested any other drink including food neutral hot water.   It is possible that in both cases the heat caused the issues with rosacea symptoms like flushing rather than the specific drink.

    It is possible to find meaningless statistical correlations between a common food or beverage and a common disease.  A better test would have been to compare drinking hot beverages vs. drinking the same beverage at room temperature vs. drinking hot water vs. drinking room temperature water.

    Good point. The papers on coffee point this out. There may be evidence that caffeine triggers a flush, but there is no evidence that coffee or tea causes a rosacea flareup. Usually the confusion is when rosaceans think flushing is rosacea or rosacea is flushing, which adds to this quandary. However, if avoiding flushing is important to a rosacean, then it would be prudent to carefully avoid caffeine induced flushing. 

  15. goodskinquality.png

    According to a paper on 'good skin quality,'  "there are no standardized criteria for good skin quality." The authors of the paper then attempted "To establish a consensus for good skin quality parameters and measurement and treatment options, a virtual skin quality advisory board consisting of a global panel of highly experienced aesthetic dermatologists/aesthetic physicians was convened." 

    The results were "strong consensus that good skin quality is defined as healthy, youthful in appearance (appearing younger than a person’s chronological age), undamaged skin and that skin quality can be described across all ethnicities by four emergent perceptual categories (EPCs): skin tone evenness, skin surface evenness, skin firmness, and skin glow." 

    You may read the entire paper yourself: 

    Clin Cosmet Investig Dermatol. 2021; 14: 643–654.
    Skin Quality – A Holistic 360° View: Consensus Results
    Kate Goldie, Martina Kerscher, Sabrina Guillen Fabi, Cyro Hirano,4 Marina Landau, Ting Song Lim, Heather Woolery-Lloyd, Kavita Mariwalla, Je-Young Park, Yana Yutskovskaya

    image courtesy of Clin Cosmet Investig Dermatol

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