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Welcome to the Rosacea Research and Development Institute [RRDi] official web site. The RRDi is a 501 (c) 3 non profit organization. If you suffer from rosacea you are a rosacean. Join us to find the cure.
We are rosaceans. Our non profit organization for rosacea patient advocacy web site is a digital data repository of rosacea information. You can add more information to our web site by joining and posting in our member forum becoming a part of 'finding the cure' for rosacea if you join. Our goal is 10,000 members. You can help us reach our goal by joining.
Where to Begin Your Search
Community Support • About Us • What Causes Rosacea? • What Should I Ask My Physician? • Rosacea Newbies • Famous Rosaceans • Rosacea in the News • Tapatalk • Contact us
Suggest you read our FAQs for at least a half hour. After that browse our member forum for another half hour.What is Rosacea?
Rosacea is a chronic and sometimes progressive disorder of the face, characterized by some or all of the following symptoms:Extremely sensitive facial skin with blushing, flushing, permanent redness, burning, stinging, swelling, papules, pustules, broken red capillary veins, red gritty eyes (which can lead to visual disturbances) and in more advanced cases, a disfiguring bulbous nose. Men and women of all ages can be affected, with over 415 million estimated rosacea sufferers worldwide.
"Rosacea is probably a collection of many different diseases that are lumped together inappropriately." Zoe Diana Draelos, MD.
Dr. Draelos is a member of the ROSIE [ROSacea International Expert] Group that says the subtype classification of rosacea is controversial. Dr. Draelos is also a member of the RRDi MAC. Just because you have a red face might mean you have another skin condition instead of or with rosacea, since other skin conditions may co-exist with rosacea, mimic rosacea or you might have a rosacea variant (a dozen variants to differentiate)."Rosacea is a multifactorial, hyper-reactivity, vascular and neural based disease with a broad range of facial manifestations where normal vasodilation is greater and more persistent and involves an autoimmune component of microscopic amounts of extravasated plasma induce localized dermal inflammation that may induce repeated external triggers, vasodilation, telangiectasias, redness with eventual fibrosis and hypertrophic scarring of the dermis." Sandra Cremers, M.D., F.A.C.S., RRDi MAC Member.
If you note, there are different definitions of what constitutes rosacea which is common. Clarity with phenotypes (see below) helps in a differential diagnosis.
Phenotypes
In November 2016, the RRDi endorsed the phenotype classification of rosacea which was announced by the ROSCO panel as a better approach of diagnosising rosacea than using subtypes.Rosacea Differential Diagnosis and Misdiagnosis
Your physician should differentiate rosacea from a plethora of other skin conditions. If you need photos of rosacea click here.Sometimes rosacea is misdiagnosed.
Treatment
'There are a number of topical, oral and systemic treatments available. Yet, treatment for rosacea remains difficult." Expert Opinion Pharmacotherapy“There’s no one treatment that’s going to work for everybody, but we evaluate each patient individually and try to select the treatments from our armamentarium that we think will be the simplest and safest for long-term control.” John Meisenheimer, MD, Orlando, The City's Magazine
""Ultimately, rosacea is a subjective and entirely individual experience." Rosacea: Beyond the visable
Cause of Rosacea
No one really knows what causes rosacea and there are a number of theories for your consideration. Our latest article on this subject, Rosacea Theories Revisited is worth your time to consider.What will the RRDi Do For Me?
You can view the list of prescription treatments prescribed for rosacea. There is a list of non prescription treatments for rosacea to consider. We have an affiliate store dedicated to rosacea books, treatments and odd and ends. You can browse our public member forum and learn about rosacea. The digital medical revolution can assist you in your search for a treatment to improve your condition. Your rosacea is an individual case and you need to find what treatment will work for your rosacea and not a treatment aimed at the masses. Individuals can come together and share data, using collaboration tools that the RRDi offers for free. If you have the volunteer spirit and want to become part of this innovative non profit, learn how you can volunteer and be part of this digital medical revolution. You can post in our member forum if you join and register simply with an email address. If you have concerns regarding your privacy, please consider this post.Once you join you have a number of tools to collaborate with other members. You can create your own rosacea blog, with easy step by step directions on how to do this. Our Gallery application lets members share photos and videos with the community. Volunteers who contribute their time and energy may receive a free G Suite account through a generous contribution of Google, one of our sponsors.
You may receive a free ebook, Rosacea 101: Includes the Rosacea Diet as a gift from the founder/director if you mention in your registration application that you want the free ebook (write in the volunteer box you want the free ebook).
You can post in our member forum about your rosacea experience. However, we want real members, not spammers, hackers or trolls. We provide a safe, secure forum for our members, so our membership registration is very secure requiring your accepting our terms for membership.
Our 2016 Rosacea Survey is completed and available for public viewing. You may review a list of our education grants. Finally, ask not what the RRDi can do for you, ask.....
What Can You Do for the RRDi?
Your joining and registering with our organization will increase our membership. All that is required to join is an email address (your email address is private and members never see your email address nor does the RRDi give your private email address out to anyone). Our goal is to reach a membership of 10,000 members. Think about that, 10,000 rosacea sufferers joined together as a non profit organization and you are member. We need you to join to help us reach this goal!The RRDi is a volunteeer member driven organization and invites rosacea sufferers to become involved. Volunteering is the force that drives the organization and is an integral spirit of the RRDi philosophy. The RRDi warmly invites rosacea sufferers to participate in this non profit which you can become a part of. You are not required to volunteer when you join, since we still want you to join even if you can't volunteer. If all you can do is become a member, that will increase our membership which is helpful in itself. So if you can volunteer, let us know on the application. Please join.
Please carefully read the next subheading on how to join and if you have concerns about privacy.
How to Join
Members may now join with just an email address and a display name (your first and last name is no longer required to be a non voting member and you can set up a anonymous or cryptic display name so that no one knows who you are). To post in our Member Forum or submit articles for publication you must register to join to become a member. The RRDi no longer requires that you provide us with your contact info and mailing address to be a non voting member. However you still need to agree to our policies, rules, etc., since you become a member of the RRDi whether a voting member or not. If you want to vote, simply include all the profile contact fields. We have over 1000 members who are voting members, so we have plenty. It is your choice if you want to vote or not.If you need assistance contact us. Our volunteers will be happy to assist you.
Your privacy is our utmost concern and we will take precautions to ensure your privacy will never be violated. Our Privacy Policy is solid. If you have concerns regarding your privacy, please consider this post.
Once you have joined you can post in our secure members forum which will allow you to post questions to the Medical Advisory Consultants (MAC) and to fellow members or to submit articles for our journal. Yes, members may have an article published on our web site or in our journal. You may receive a free G Suite account with our organization if you have the volunteer spirit.
Charter and Mission Statement
The Charter of the Corporation states the purpose and Mission Statement which clearly outlines the goals of our non profit corporation. If you are interested in the history of how and why this non profit organization was formed click here for more information.Of course there are expenses to keep this non profit organization going. Any donation you give will assist us to continue to keep this web site going, publish our journal, and sponsor education grants. Mahalo for your donation. even if it is small. Every dollar helps us keep going.
The RRDi is registered at GuideStar
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Posts
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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. -
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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.
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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
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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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Tom Busby, SD poster extraordinare at RF, mentioned in a post on this subject at RF, "an alternative source of ivermectin, on eBay" which is ivermectin powder. I asked Tom whether this would be a good idea since it seems a lot safer to use the horse paste than have to concoct a paste with grain alcohol and his comment is, "horse paste is fairly expensive for a really tiny amount of product.... I have to assume that someone who has some experience formulating hot emulsions (oil in water) could make a non-greasy cream with this ivermectin powder." I would prefer the horse paste for a trial run before purchasing a chemistry set to make this. Most rosaceans are not into a laboratory approach to treatment preferring a pill or a topical than experimenting with such treatments in a lab coat. But, of course, this is the internet, and guess what? Horse paste for rosacea. Watch Mr. Wizard concoct a new rosacea treatment on YouTube. Maybe we will hear reports of this. If you haven't heard of the new TXA treatment, it also requires concocting a rosacea treatment yourself by purchasing powder from Amazon or your local chemical store.
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