Jump to content
  • rrdiLogo384x64.jpg.3cd1bd79f5d066075bdd9

    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. This page is our welcome page and is designed for rosacea newbies. We also have a post for rosacea newbies. We allow guests to post here without registering. 

    rosaceans.png

    IS THIS ROSACEA?

    This question is probably the most frequently asked question on the internet about rosacea. Click here for the answer 

    Where to Begin Your Search 
    Simple Rosacea Regimen • Rosacea Topics Corona Virus and RosaceaCoronavirus with Personal Protective Equipment • Does Rosacea Progress In Stages?Will I Develop Rhinophyma? • Community Support • What Causes Rosacea? • What Should I Ask My Physician?  Rosacea Newbies Gold Standard for Rosacea Treatment • When Rosacea Resists Standard Therapies • Rosacea X-Factor • Famous Rosaceans  Rosacea in the News  Rosacea Research in Perspective of Idiopathic Diseases • Rosacea Research in Perspective of Funding • Rosacea : A Chronic Inflammatory Disease • What is the Butterfly Effect in Rosacea? •  More is Better vs Less is MoreTapatalk • RRDi Tee ShirtsContact us • Site Index • Read the Recent Activity •

    Recommend you read our FAQs for at least a half hour. After ç browse our public member forum for another half hour. If you are concerned about privacy, we have several options which are discussed below by scrolling to 'How to Join' in the third paragraph under that subheading which explains those options. 

    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 rosaceamimic rosacea or you might have a rosacea variant (over 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. If your dermatologist still refers to subtypes, he/she is not keeping up with the latest classification of rosacea and you should point this out to your physician. Learn more about phenotypes

    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

    There are prescription, non prescription and natural or alternative treatments (check out our affiliate store) for rosacea that the RRDi keeps up with and posts on our website. Volunteer Members also contribute to the website. You will not find any other website about rosacea that has more information on rosacea than the RRDi. None. The RRDi website is a wealth of rosacea data found no where else on the internet (you can google and find rosacea information and the results will include what is categorized in appropriate places on our website). Volunteers make sure of this. You can join and continue to add to the rosacea data. Isn't that what volunteering is all about? 

    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?
    If you are a rosacea newbie read this post. 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 may find what treatment will work for your rosacea and not a treatment aimed at the masses. Rosaceans 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. One other tool you can use is setting up your own Club

    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). If you are already a member and want the ebook just fill out the contact form and request a copy

    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 when you register. Or just join with an email address and let us know later you want to volunteer. Please join or public forum. Or you may prefer our new private forum

    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 grantsMahalo for your donation. even if it is small. Every dollar helps us keep going.  

    The RRDi is registered at GuideStar

    guidestorelogo50.pngguidestartransparency50.png

  • Member Statistics

    • Total Members
      1,367
    • Most Online
      499

    Newest Member
    Tracy Chen
    Joined
  • Forum Statistics

    • Total Topics
      4,793
    • Total Posts
      7,747
  • Posts

    • The RRDi has been using Invision Community forum platform since 2004. When we started in 2004 it was recommended by Warren Stuart who was the assistant director of the RRDi to use what was then called Invision Power Services (later the name was changed to Invision Community). It is a powerful platform with many add-on features and a significant number of developers adding plugins and additional features to the platform. However, with the advent of mobile devices and social media platforms the trend has focused on mobile apps using iOS and Android devices found in the Apple App Store and Google Play Store. The popularity of using these apps over using a browser to view a website has increased the use of social media platforms such as Reddit, Facebook, Instagram, Twitter, etc. The developers and owners of the Invision Community platform have now announced beta versions of iOS and Android apps for their platform which has been embedded for years using only a web browser, so we have announced with this post here asking for volunteers to download the beta versions and help test these new apps. Please consider volunteering and using these beta versions of the apps.  Invision Community Clients There are some significant clients who use Invision Community as their platform which you can see below:  Medical Clients Who Use Invision Community Platform
    • Amelioration of Compound 48/80-Mediated Itch and LL-37-Induced Inflammation by a Single-Stranded Oligonucleotide. Front Immunol. 2020;11:559589 Authors: Dondalska A, Rönnberg E, Ma H, Pålsson SA, Magnusdottir E, Gao T, Adam L, Lerner EA, Nilsson G, Lagerström M, Spetz AL Abstract Numerous inflammatory skin disorders display a high prevalence of itch. The Mas-related G protein coupled receptor X2 (MRGPRX2) has been shown to modulate itch by inducing non-IgE-mediated mast cell degranulation and the release of endogenous inducers of pruritus. Various substances collectively known as basic secretagogues, which include inflammatory peptides and certain drugs, can trigger MRGPRX2 and thereby induce pseudo-allergic reactions characterized by histamine and protease release as well as inflammation. Here, we investigated the capacity of an immunomodulatory single-stranded oligonucleotide (ssON) to modulate IgE-independent mast cell degranulation and, more specifically, its ability to inhibit the basic secretagogues compound 48/80 (C48/80)-and LL-37 in vitro and in vivo. We examined the effect of ssON on MRGPRX2 activation in vitro by measuring degranulation in a human mast cell line (LAD2) and calcium influx in MRGPRX2-transfected HEK293 cells. To determine the effect of ssON on itch, we performed behavioral studies in established mouse models and collected skin biopsies for histological analysis. Additionally, with the use of a rosacea mouse model and RT-qPCR, we investigated the effect on ssON on LL-37-induced inflammation. We reveal that both mast cell degranulation and calcium influx in MRGPRX2 transfected HEK293 cells, induced by the antimicrobial peptide LL-37 and the basic secretagogue C48/80, are effectively inhibited by ssON in a dose-dependent manner. Further, ssON demonstrates a capability to inhibit LL-37 and C48/80 activation in vivo in two mouse models. We show that intradermal injection of ssON in mice is able to block itch induced via C48/80 in a dose-dependent manner. Histological staining revealed that ssON inhibits acute mast cell degranulation in murine skin treated with C48/80. Lastly, we show that ssON treatment ameliorates LL-37-induced inflammation in a rosacea mouse model. Since there is a need for new therapeutics targeting non-IgE-mediated activation of mast cells, ssON could be used as a prospective drug candidate to resolve itch and inflammation in certain dermatoses. PMID: 33101278 [PubMed - in process] {url} = URL to article
    • * Artificially Sweetened Drinks "Records for 104,760 participants were included....Artificially sweetened beverages were defined as those containing non-nutritive sweeteners. Sugary drinks consisted of all beverages containing 5% or more sugar....Researchers looked at first incident cases of cardiovascular disease during follow-up from 2009-2019, which were defined as stroke, transient ischemic attack, myocardial infarction, acute coronary syndrome and angioplasty. After excluding the first three years of follow-up to account for potential reverse causality bias, 1,379 participants had first incident cases of cardiovascular disease. Compared to non-consumers, both higher consumers of sugary drinks and of artificially sweetened beverages had higher risks of first incident cardiovascular disease, after taking into account a wide range of confounding factors..." Artificially sweetened drinks may not be heart healthier than sugary drinks, Medical Xpress, October 27, 2020, research letter in the Journal of the American College of Cardiology,  Sugar Any Better? "Drinking one or more sugary beverages a day was associated with a nearly 20% greater likelihood of women having a cardiovascular disease compared to women who rarely or never drank sugary beverages, according to new research published today in the Journal of the American Heart Association, an open access journal of the American Heart Association." California study finds drinking sugary drinks daily may be linked to higher risk of CVD in women, Medical Xpress, May 13, 2020, by American Heart Association Research on Sugar Beverages Triggering Rosacea Do you think it is possible for a non profit organization for rosacea get its members to each donate one dollar to investigate whether or not sugar beverages or artificially sweetened drinks are a rosacea trigger in a double blind, placebo controlled, peer reviewed clinical study? It would take approximately 10K members to do this if the members wanted this. What do you think? Have you noticed whether drinking a sugar beverage triggers your rosacea? *Image credit CCO public domain
    • 13 Variants of Rosacea The RRDi recognizes these thirteen variants of rosacea:  Demodectic Rosacea  Gastrointestinal Rosacea [GR], aka, Gut Rosacea Glandular Rosacea  Granulomatous Rosacea Halogen rosacea  Idiopathic facial aseptic granuloma (IFAG)  Neurogenic Rosacea  Pyoderma Faciale  Rosacea Conglobata  Rosacea Fulminans  Rosacea Lymphedema (Morbihan Disease) Rosacea Perioral Dermatitis [RPD] Steroid Rosacea [Facial corticosteroid addictive dermatitis] (FCAD) Etcetera Variant vs Subtype vs Phenotype
    • A new article on the pathophysiology of rosacea overlaps with demodectic rosacea and the phenotype classification. Below are the three highlights considered in the paper:  (1) New hypotheses to explain how Demodex mites may control host immunity, by analogy with what happens in tumor pathology: inducing tolerogenic dendritic cells through their Tn Ag, and diverting the body's defence reaction by exploiting the immunosuppressive properties of VEGF;  (2) Leading to consider rosacea not as a disease of the innate immunity, but as a chronicle infection by Demodex with T cell exhaustion; Highlighting of the ambiguities of the current definition of rosacea of the NRS, and the overlap with demodicoses, suggesting that all these dermatoses are different phenotypes of the same disease; (3) The suggestion, for the dermatologists, to learn to detect the demodicoses among the patients with persistent erythema, in the aim to treat at least these patients with topical acaricidal treatment. The article concludes, "The interactions among VEGF, Demodex, and the immune system need further exploration and the nosology of rosacea would then need to be adapted accordingly. The effectiveness of treating any patient with ETR first with an acaricidal cream needs to be assessed in prospective controlled clinical trials with long-term follow-up. Currently, learning to distinguish patients with pityriasis folliculorum from those with isolated ETR is crucial so that they can be managed appropriately with an acaricidal cream." [1] [1] Forton, F.M.N. The Pathogenic Role of Demodex Mites in Rosacea: A Potential Therapeutic Target Already in Erythematotelangiectatic Rosacea?. Dermatol Ther (Heidelb) (2020). https://doi.org/10.1007/s13555-020-00458-9 Image courtesy of Dermatology and Therapy
    • The Pathogenic Role of Demodex Mites in Rosacea: A Potential Therapeutic Target Already in Erythematotelangiectatic Rosacea? Dermatol Ther (Heidelb). 2020 Oct 23;: Authors: Forton FMN Abstract Rosacea is a common facial dermatosis but its definition and classification are still unclear, especially in terms of its links with demodicosis. Triggers of rosacea (ultraviolet light, heat, spicy foods, alcohol, stress, microbes) are currently considered to induce a cascading innate and then adaptive immune response that gets out of control. Recent histological and biochemical studies support the concept that this inflammatory response is a continuum, already present from the onset of the disease, even when no clinical signs of inflammation are visible. The Demodex mite is beginning to be accepted as one of the triggers of this inflammatory cascade, and its proliferation as a marker of rosacea; moreover, the papulopustules of rosacea can be effectively treated with topical acaricidal agents. Demodex proliferation appears to be a continuum process in rosacea, and may not be clinically visible at the onset of the disease. Molecular studies suggest that Demodex may induce tolerogenic dendritic cells and collaborate with vascular endothelial growth factor (VEGF) to induce T cell exhaustion and favor its own proliferation. These interactions among VEGF, Demodex, and immunity need to be explored further and the nosology of rosacea adapted accordingly. However, treating early rosacea, with only clinically visible vascular symptoms, with an acaricide may decrease early inflammation, limit potential flare-ups following laser treatment, and prevent the ultimate development of the papulopustules of rosacea. The effectiveness of this approach needs to be confirmed by prospective controlled clinical trials with long-term follow-up. Currently, the evidence suggests that patients with only vascular symptoms of rosacea should be carefully examined for the presence of follicular scales as signs of Demodex overgrowth or pityriasis folliculorum so that these patients, at least, can be treated early with an acaricidal cream. PMID: 33095403 [PubMed - as supplied by publisher] {url} = URL to article More in Demodectic Rosacea
×
×
  • Create New...