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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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Complete Decongestive Therapy Is an Option for the Treatment of Rosacea Lymphedema (Morbihan Disease): Two Cases. Phys Ther. 2018 Dec 18;: Authors: Kutlay S, Ozdemir EC, Pala Z, Ozen S, Sanli H Abstract
Background and Purpose: Morbihan disease, also known as rosacea lymphedema, is a rare persistent form of lymphedema that is associated with the disease of rosacea. Even though acne rosacea responds well to standard medical treatment, the lymphedema component of the disease is resistant to both medical and surgical therapy. Complete decongestive therapy (CDT) may be considered as a conservative alternative option for treatment of rosacea lymphedema. To date, there is no report on the use of CDT in treating facial lymphedema secondary to acne rosacea.
Case Description: Here, we present two cases of women with a diagnosis of Morbihan disease and chronic facial lymphedema which remained resistant to drug treatment for many years before CDT was offered. The treatment program included 4 components: manual lymphatic drainage (MLD), compression bandaging, exercises to enhance lymphatic drainage, and patient education.
Outcomes: Following 10 to 15 sessions of CDT, the first patient's facial edema had almost completely resolved, and she remained edema-free one month after treatment. The second patient's response to treatment was assessed as moderate.
Discussion: To the best of our knowledge, these two cases of Morbihan disease treated with CDT are the first of their kind to be presented in the literature. As the treatment options for Morbihan disease remain inadequate, we believe that CDT should be considered as a treatment option in those patients who do not benefit from or refuse drug treatment, before moving on to more invasive procedures. Prospective studies should be designed to demonstrate the efficacy of CDT and provide management details.
PMID: 30561675 [PubMed - as supplied by publisher] {url} = URL to article -
NRS Review of Form 990 for 2017 In December 2018, the NRS published its Form 990 for 2017. This year marks the fourth highest banner year in donations, the first highest banner year was in 1998 which the donations totaled over $1 million dollars ($1,148,375). In 2017, the NRS received in donations $929,730.00, just $216,645 short of its 1998 banner year. So let's review what the NRS spent its donations on. First off, let's be clear that Samuel B Huff, Director, signed off on page one of the 2017 Form 990, and on page 7, under the heading, Part VII, Compensation, it shows that Samuel B Huff, President, was paid $119,100 under the column, Reported compensation from related organizations. Also Mary F Erhard, Secretary, was paid $27,963 making a grand total here of $147,063. Grants spent this year on rosacea totaled $74,443. So if you do the math, the total spent on rosacea research grants in 2017 amounts to 8% of the total revenue donated to the NRS. Putting this into something you can understand a little clearer, for every dollar donated to the NRS 8 cents was spent on rosacea research grants. What did the NRS spend the rest of the money on? On page 10, Part IX, Expenses, it shows a list totalying $763,980. Of that total, $105,494 was spent on Information Technology. You can read the rest yourself. Scrolling down to Schedule R (Form 990) Part V, you will note there are two corporations listed under TRANSACTIONS WITH RELATED ORGANIZATIONS, which are the following: Glendale Communications Group, Inc. $498,910. Park Mailing and Fulfillment, Inc. $70,194.00 The above two corporations is where a total of $569,104 was spent which are the related organizations the NRS used and this amounts to 61% of its total donations received. These two private corporations are owned by Samuel B Huff, the Director/President of the NRS. For proof, read this post. Read the NRS Form 990 for 2017:
nrs_990_2017.pdf -
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Related Articles Giant rhinophyma in low-resource setting: a case report. Int J Dermatol. 2017 Aug;56(8):875-877 Authors: Antunes M, Frasson G, Ottaviano G, Schiavone M, Pizzol D PMID: 28650103 [PubMed - indexed for MEDLINE] {url} = URL to article
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Dietary supplementation with turmeric polyherbal formulation decreases facial redness: a randomized double-blind controlled pilot study. J Integr Med. 2018 Nov 22;: Authors: Vaughn AR, Pourang A, Clark AK, Burney W, Sivamani RK Abstract
BACKGROUND: Facial redness is multifactorial in nature and may be a sign of many different conditions, including rosacea, photo damage and flushing. Herbal medicines have been used for thousands of years to treat a variety of dermatological conditions. Turmeric (Curcuma longa) and its constituents have been shown to mediate dilation and constriction of peripheral arterioles and have demonstrated anti-oxidant, anti-inflammatory and wound-healing properties.
OBJECTIVE: To investigate the effects of turmeric and turmeric-containing polyherbal combination tablets versus placebo on facial redness.
DESIGN, SETTING, PARTICIPANTS, AND INTERVENTIONS: This was a prospective, double-blind, randomized pilot study. Thirty-three healthy participants were recruited from the dermatology clinic at the University of California, Davis and nearby community from 2016 to 2017. Thirty participants were enrolled, and 28 participants completed the study. The enrolled participants were randomized to receive one of three interventions (placebo, turmeric or polyherbal combination tablets) and were told to take the intervention tablets by mouth twice daily for 4 weeks. Facial redness was assessed at baseline and 4 weeks after intervention by clinical grading and by image-based analysis.
MAIN OUTCOME MEASURES: The primary outcome measure was image-based facial quantification of redness using a research camera and software analysis system. The investigators performed an intention-to-treat analysis by including all subjects who were enrolled in the trial and received any study intervention. Differences were considered statistically significant after accounting for multiple comparisons. Effect sizes for clinical grading were calculated with a Hedges' g where indicated.
RESULTS: Twenty-eight participants completed the study and there were no reported adverse events. Based on clinical grading, facial redness intensity and distribution down trended in the polyherbal combination group after 4 weeks (P = 0.1). Under photographic image analysis, the polyherbal combination group had a significant decrease in redness of 40% compared to baseline (P = 0.03). The placebo and turmeric groups had no statistically significant changes in image analysis-based facial redness.
CONCLUSION: Polyherbal combination tablet supplementation improved facial redness compared to the turmeric or placebo. Overall, our findings suggested further investigations into the effects of turmeric and polyherbal formulations in skin conditions associated with facial redness would be warranted.
TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT03065504.
PMID: 30527287 [PubMed - as supplied by publisher] {url} = URL to article -
Nested Polymerase Chain Reaction and Cutaneous Tuberculosis. Am J Dermatopathol. 2018 Nov 27;: Authors: Maldonado-Bernal C, Ramos-Garibay A, Rios-Sarabia N, Serrano H, Carrera M, Navarrete-Franco G, Jurado-Santacruz F, Isibasi A Abstract
The role of Mycobacterium tuberculosis in the etiology and pathogenesis of cutaneous tuberculosis is controversial because of the difficulties associated with demonstrating the presence of these mycobacteria in tuberculid cutaneous lesions by routinely available microbiological and histological techniques. In this study, we aimed to demonstrate the presence of M. tuberculosis in cutaneous tuberculosis. Multiple polymerase chain reaction (PCR) followed by nested PCR was used to amplify genomic fragments from 3 different mycobacteria species. DNA was isolated from 30 paraffin-embedded skin biopsies. Samples were selected randomly from patients with a clinical and histopathological diagnosis of the most frequent groups of cutaneous tuberculosis in Mexico as follows: 5 cases of scrofuloderma tuberculosis; 2 cases of lupus vulgaris tuberculosis; and 5 cases of tuberculosis verrucosa cutis. The other cases denominated tuberculids in some countries such as Mexico and included the following: 7 cases of rosacea-like tuberculosis; one case of papulonecrotic tuberculosis; and 10 cases of erythema induratum of Bazin. Four normal skin biopsies were included as controls. M. tuberculosis DNA was amplified successfully by nested PCR in 80% of the samples (24 of the 30 samples) assayed. Mycobacterial DNA was not detected in the normal skin biopsies used as controls. Detection of M. tuberculosis DNA in 80% of cutaneous tuberculosis analyzed implicates this mycobacterium in the pathogenesis of multiple clinical forms of cutaneous tuberculosis.
PMID: 30531542 [PubMed - as supplied by publisher] {url} = URL to article
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