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  • Welcome to the RRDi official web site. Finding the Cure. 

    Where to Begin Your Search

    Suggest you read our FAQs for at least a half hour. After that browse our member forum for another half hour. If you have questions contact us. If you want to know who we are read this page

    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 75 million estimated sufferers of Rosacea 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 besides rosacea.

    "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.

    Phenotypes

    The RRDi has endorsed the phenotype classification of rosacea which was announced by the ROSCO panel as a better approach of diagnosising rosacea than subtypes.

    Rosacea Differentiation 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. 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 the time. Rosacea, therefore, can be confusing, a bewilderment and a mystery

    What will the RRDi Do For Me?

    You can view the list of prescription treatments prescribed for rosacea which members can review. There is a huge list of non prescription treatments for rosacea to consider. We have an affiliate store dedicated to rosacea books, treatments and odd and ends which members can rate products. You can browse our public member forum and learn about rosacea. The RRDi is way ahead of other rosacea non profit organizations with the digital medical revolution. 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. 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).

    Our 2016 Rosacea Survey is completed and available for public viewing.  You may review a list of our education grants

    What Can You Do for the RRDi?

    Your joining and registering with our organization will increase our membership. Any donation you give will assist us to continue to keep this web site going, publish our journal, and sponsor education grantsMahalo for your donation. even if it is small. Every dollar helps us keep going. 

    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

    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. 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. 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 but with no voting privileges. However you still need to agree to our policies since you become a member of the RRDi whether non voting or not. If you want to vote, simply include all your profile fields. If you don't understand how to do this contact us. Your privacy is our utmost concern and we will take precautions to ensure your privacy will not 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. 

    Conclusion

    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.  Mahalo. 

    The RRDi is registered at GuideStar

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  • Posts

    • "In the recent study, Di Nardo and colleagues have found that transient receptor potential vanilloid 4 (TRPV4) activates mast cells in people with rosacea." Researchers discover rosacea treatment pathway, Healio For more information on this read the post, 
      Trigeminal sensory malfunction theory
    • "It didn't take long to be diagnosed with rosacea and told that "there is not much known about it and no known cure". All four of the dermatologists I visited (yes, four - I was determined to find one who would offer a glimmer of hope) explained that it was chronic inflammation where blood vessels dilate too easily. It occurs most commonly in women (check) with fair skin (check) who are prone to blushing (check). So, at an age when I assumed I was well beyond my "skin-issue" years, I was suddenly a textbook case. All the doctors told me to treat it with oral and topical antibiotics." Dealing With Rosacea: Under My Skin, Calgary Avansino, Vogue
    • "Lena Dunham has spoken out in the past about her mental health difficulties, her endometriosis and her battles with social-media trolls, but this time she has turned her attention to a skin issue that plagues people all over the world: rosacea." Lena Dunham Speaks Out About Rosacea, Vogue
      image courtesy Wikicommons
    • Granulomatous rosacea: a case report. J Med Case Rep. 2017 Aug 20;11(1):230 Authors: Kelati A, Mernissi FZ Abstract
      BACKGROUND: Granulomatous rosacea is a rare chronic inflammatory skin disease with an unknown origin. The role of Demodex follicularum in its pathogenesis is currently proved.
      CASE PRESENTATION: We report a case of a 54-year-old Moroccan man with a 3-month history of erythematous, nonpruritic papules on the lateral side around the eyes. Dermoscopy and histology confirmed the diagnosis of granulomatous rosacea.
      CONCLUSIONS: We describe another clinical presentation of granulomatous rosacea with a clinical-dermoscopic-pathological correlation.
      PMID: 28822351 [PubMed - in process] {url} = URL to article
    • Originally intended for those suffering from rosacea and eczema, this redness-neutralizing cream comes in three shades and has an irritation-soothing, sensitive-skin-comforting formula made up of colloidal oatmeal, peptides, hydrolyzed collagen, aloe, and avocado to calm, smooth, and hydrate the skin. This Concealer Was Made For Rosacea, but Is Baller at Covering Acne Scars,  by MEGAN MCINTYRE, Popsugar IT Cosmetics Bye Bye Redness Neutralizing Correcting Cream
    • Tom Busby, poster extraordinair at RF, posted the following which is worth reading (post no 2 in this thread):  Hi Stephan, you're right that demodex can cause dry eye symptoms, and plugging of the meibomian glands. Your photo shows a small whitish plug inside the margins of the eyelashes, which is where the meibomian glands are located. I suggest you read as much as you can, and use google search terms like "inspissated meibomian glands," which is the medical term for plugged meibomian glands, and your description of dry eyes upon waking is called "saponification." "Meibomian Gland Dysfunction" (MGD) is the general term, and demodicosis or demodectic blepharitis would be more specific terms.

      The medical profession is obsessed with the naming of things, and you'll eventually learn more if you go through the steep learning curve of learning the medical terms. I did all this when I found I had conditions very similar to yours.

      Plus, the eyes have extremely complicated anatomy, which you will need to learn. To get you started, the function of the meibomian glands is to release a tiny bit of oil each time you blink (from the blink pressure) and the oil floats on top of the tear film, and slows down the evaporation of the aqueous component. The Glands of Moll and the Glands of Zeiss also release oil. The lack of oil is the problem, and is why eye drops don't do anything at all.

      The plug that is outside the margin of the eyelashes, in your photo, is most like a plugged up Gland of Moll. These plugs are mostly a cosmetic problem, and are the result of dead demodex decaying and causing an allergic reaction. A prominent rosacea MD refers to them as "the gravestone of a dead demodex." The crusty skin below your eyes appears to be a combination of demodex-induced and malassezia-induced reactions. Climbazole treats against malassezia, but does nothing against demodex.

      You can gently express the meibomian glands, and you'll learn a lot by examining the quality and quantity of fluid that comes out. You'll need to read a lot more about this, but in very general terms, it's easier to start with the lower lid, and roll a finger gently up. Don't do this over and over, because the amount of oil in the mebomian glands is tiny, and there's no point to emptying the glands by doing it over and over. Most likely, nothing will come out of your meibomian glands, which is not what you want to see, at all, but it will show how bad the situation is. Perhaps the fluid will be discolored, or thickened -- this is also showing the need for treatment.

      The best current medically accepted treatment is 25% Tea Tree Oil (TTO), or preferably, a derivative of it called terpinen 4-ol. These procedures and products are patented. The main problem is that these treatments can't be self-administered, because both products burn the cornea, and generally require about a weekly one-hour office visit to an ophthalmologist. Worse yet, in the US these treatments aren't covered by insurance, but I'd like to know if they are covered in Canada. Treatments would cost tens of thousands of dollars. The condition, if it is indeed and allergic reaction, is most likely recurring.  

      You could self-treat with Cliradex wipes, which are 5% TTO, or terpinen 4-ol, but the concept could also be imitated by making your own Cliradex wipes, with 5% TTO and 95% MCT oil. Use before bedtime. Demodex males move around at night, and they're easier to kill. TTO is a contact-killer.

      I never used TTO or terpinen 4-ol as a treatment, because the idea of putting any essential oil near my eyes seemed to being inviting a disaster. My eyes are too important to me, as I read a lot.  

      However, after two years of effectively treating against seb derm induced by an allergic reaction to malassezia, using climbazole as the active ingredient, I found that my eyes were becoming more dry and bloodshot, so a year and a half ago, I went through a second incredibly steep learning curve to find out how I could treat MGD and demodectic blepharitis. 

      As I had previously learned how to make an MCT lotion and an MCT shampoo/shower gel with climbazole, I decided to test other compounds -- only safe ones -- and I found that piroctone olamine suppressed or eradicated demodex. Now my meibomian glands are unblocked, and have remained unblocked for over a year.  

      I use piroctone olamine at a concentration of 0.14%, and climbazole at 0.09%. Neither of these products is applied directly to the cornea or onto an open eye, which would be ridiculously dangerous in my opinion.

      However, my method of trying something to see if it works, is generally called "foraging research" and is not considered scientifically acceptable today, but it's how most discoveries were made before medicine became so incredibly complex and expensive. Nevertheless, I was so exhausted by the expense and futility of the medical system, that I did my own research and experimentation both as to malassezia and then as to demodex.

      Expect to use daily treatment with topical piroctone olamine for 23 days to see initial results, and 120 days for about 99% treatment, and 180 days for full treatment. The process of taking a shower, lathering up with the shower off for 3-5 minutes, then rinsing off and towel drying, and then applying a lotion, is very simple, so the time involved is not oppressive because the treatment is merely ordinary, daily hygiene, using an effective ingredient.

      There's a larger list of things that either don't work, or don't treat against demodex, and they're listed here, and in many other medical articles:  http://www.reviewofophthalmology.com/content/c/36944/ 

      You can't buy piroctone olamine-based cosmetics in the US or Canada because there isn't a Final Monograph approved by the FDA, and Canada follows the FDA in these matters. However, there is a Preliminary Monograph on Octopirox, another name for piroctone olamine, and one can see that piroctone olamine has a 3000 to 1 safety ratio, which is huge. With climbazole, the EU considers a 100 to 1 safety margin acceptable, so it's clear that piroctone olamine is much safer.

      There is no reason for a manufacturer to spend the millions of dollars necessary for a Final Monograph on piroctone olamine, because there are many OTC products overseas and already on the market, making the expense unrecoverable. The same reasoning shows the futility of a patented prescription product, although it would be possible, but it would be undercut by consumers who are willing to buy OTC products from overseas web-vendors.

      You could find some of these OTC piroctone olamine products on eBay or Amazon, but I'm not certain if they would ship them to the US or Canada. It would be worth your time and effort to try to obtain these products, as they aren't very expensive.

      Keep in mind that I'm merely a guy that reads a lot and is willing to try to figure things out, so you'll need to form your own conclusions. Good Luck!
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