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  • Corporate Membership is open to the public and rosaceans are welcome

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    1. RRDi members must be polite and respectful to fellow members taking into consideration the individual fellow member's religious, ethical, and cultural values, as well as age, race and sex. The institute determines what is polite and respectful and may or may not give warnings for violating this rule. Removal from the membership is possible for violating this rule. It is a privilege to be a member of the RRDi and not a right.

    2. To be a legal corporate voting member a name, mailing address, two email addresses, and a statement of whether the member is a rosacean or not a rosacean is required. Non voting members are only required to provide a valid email address. 

    3. Members may not profit from the institute; however, any Medical Advisory Consultants (or Committee) member or any other member may be compensated for services rendered to the institute.

    4. Members who sell items or services for rosacea may comment on a treatment, product, book or service sold by the member when another member asks for information. However, the institute may at any time stop the discussion, delete the posts or ban the member at the sole discretion of the institute. Warnings may or may not be given to the member by the institute. Profiting from contacts of fellow members through the institute is not the purpose of this non profit institute. However, information is acceptable to post when asked and appropriate comments are allowed subject to the approval by the institute. The RRDi determines if the post is appropriate or not and you agree to this decision.

    5. Voting members should state if they have a diagnosis of rosacea from a physician and failure to discuss this may be grounds for dismissal as a member. The institute needs to know which voting members are rosaceans to determine the percentage of voting members who have a diagnosis of rosacea from a physician and which voting members are not rosacea sufferers. Non voting members are also required to state if they have a diagnosis of rosacea if another member inquires.  

    6. Privacy is of concern to the institute. Names, mailing and email addresses are not given out to the public or to fellow members by the institute. Your public profile is available to anyone to view but only shows your location, country, and whether you are a rosacean if you put data into these public profile boxes. Your personal profile like first and last name, etc., is never shown to the public and only RRDi staff members can view your personal profile. You agree to allow your public profile to be shown. Members should not release names, mailing or email addresses of fellow members if you are aware of the personal contact information of a fellow member without the consent of the fellow member. A Privacy Policy is available for the public. Members who donate to the institute will be listed with their name and the amount unless the donor requests anonymity. If you want to remain anonymous please let the institute know when you donate otherwise your name will be posted without any address, phone, or email address.

    7. Members will adhere, agree to and obey the Charter, Articles of Incorporation, the Bylaws, the Conflict of Interest Policy and these Rules of the Institute. Violation of any of these rules may be grounds for being removed as a corporate voting member or non voting member. You may view these documents by request or check the site index.

    8. A 'rosacean' is a rosacea sufferer. 'Institute' refers to the RRDi. RRDi refers to the Rosacea Research & Development Institute. You accept these terms.

    9. Anyone can join as a non voting member and post in the forum without providing any contact information other than a valid email address. 

       10.  The Rules of the Institute may be changed at any time at the sole discretion of the institute. 

     

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  • Posts

    • So going to the gym or exercising to increase muscle mass may improve your rosacea. Just about any physician will tell you that exercise and eating healthy will improve not only health but also your rosacea. 
    • Dr. Chris Steele talks about LDN. 
    • 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. 
    • Flugs at RF has started a thread indicating that low dose Naltrexone helps with phenotype 1 (of course Flugs calls it subtype 1). If you read the entire thread Flugs also takes propranolol (10 mg 3 times daily ), uses IPL (post no 29), however, in post no 49 Flugs writes, "I’ve also dropped all the meds I have tried in the past, none of which seemed to help much anyway... at least not enough for me to want to do something to my heart in order to help my face. So all I’m taking now is LDN and a tablesppon of apple cider vinegar every day." Flugs reports at post no 80, "On the down side though - I have to confess that i have had a few (pretty minor) flushes in the past two or three weeks. Almost always for no apparent reasons. It may still be post IPL recovery, last one was a month ago.. but IPL recoveries used to be waaaayyy worse, so if this is all I get I'm fine with that. I confess I have also been dabbling with (very mild) mandelic acid of late - I think I was overdoing it - Ive dialled back." So Flugs is still trying some other treatments along with LDN. In post 99 he mentions his 12th IPL treatment.  At post no 112 Flugs writes, "I am still prone to flushing a little when I get too warm - and also (oddly) when I am trying, and failing, not to fall asleep, such as late at night in front of the tv (that’s always made me flush.. does that happen with anyone else!?) when I say “flushing a little” I mean that my cheeks get red and feel warm, but I can take it down pretty much instantly by cooling them (fan, water spray etc) in some way. Even if I were to leave them be they would go down themselves within a few mins... compare that to the sometimes 12 hour long painful flushes I got when the rosacea arrived two years ago." Judworth who suffers from Neuropathic Rosacea (has lots of posts) reports in the same thread Flug started mentioned above about his experience taking LDN, "Since taking LDN I am cautiously happy to report that I haven't had any facial nerve pain, I still get the warm room flush, but my face is less reactive in general, even after a spell on the computer (which always gave me an element of activity even if it wasn't a full-blown flush)." At post no 117 Judworth writes, "LDN has been a god-send for me, not only calming the skin, stopping my facial nerve pain and halting the burning sensation in my mouth caused by lichen planus, I feel it is somehow re-booting my faulty immune system!" The low dose Naltrexone is usually starting out at 1 mg and gradually increasing to 4.5 mg. Flugs insists that taking more than this won't work (go through his thread which has many other users reporting success with what they call LDN).  You may want to show your doctor this pdf:  Low-dose Naltrexone (LDN) Fact Sheet 2014 LDN Research Trust LDNNow
    • image courtesy of IMDB Canadian Egyptian actress Christine Solomon has rosacea. She is reported as stating, "I purchased acne products off the shelf, and that turned out to be a big mistake! My cheeks became inflamed because of the ingredients in those products, and my condition worsened. That’s when I consulted a dermatologist for the first time, and he diagnosed me with rosacea at the age of 14 years old." Ms Solomon is the 2018 spokesperson for the Acne and Rosacea Society of Canada’s Rosacea Awareness Campaign. Canadian Egyptian Actress On Rosacea, Acne and Rosacea Society of Canada
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