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NPR Interview with Ed Yong in his new book, I Contain Multitudes: The Microbes Within Us and a Grander View of Life,
The RRDi is an Amazon Associates. Purchasing the following rosacea publications through our site gives us a small fee which will be used to help us continue to publish the Journal of the RRDi and find the cure for rosacea.
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You may have some thoughts on the subjects of anonymity, transparency and posting on the internet. This post is our explanation of how we understand these three subjects and if you have any thoughts on this, you are welcome to hit the REPLY TO THIS TOPIC button and add your thoughts.
RRDi
The RRDi is transparent when it comes to how we spend our donations with our financial page. We have the Guidestar Seal of Platinum Transparancy.
Privacy Policy
Our privacy policy is second to none and we challenge anyone to find any loop holes or tell us how we can improve it.
Private Member Forum
We have implemented measures so that only members can view the member forum using the Invision Community platform which is the most secure and private rosacea forum on the internet. If you use Sign in with Apple, you can hide your email address totally, the ultimate in privacy registration.
GuestsGuests can create a cryptic display name and browse our website for free in areas open to guests. We have a guest forum that allows guests to post for free.
Voting Members
Voting members are required to give us first and last name, address, phone number and an alternate email address. If you are concerned about your privacy when joining the RRDi as a voting member, you can rest assured our privacy policy is solid and we would never disclose your contact information with anyone without your permission.
Anonymity vs Transparency
Where do you stand on this issue? If you haven't given this much thought you may want to read the article published on Mashable, Transparency vs. Anonymity: Where Do You Stand? [INFOGRAPHIC & POLL]. Of course, everyone wants both anonymity and transparency, however, as the Mashable article points out usually you favor one over the other, so there is a balance to consider. The RRDi tries to balance anonymity and transparency, so, depending on where you stand on this issue you have choices.
Transparency
One of the core principles of the RRDi is transparency, which can be seen reading our charter. The RRDi has received the Platinum seal rating from Guidestar on Transparency. Not all non profit organizations for rosacea have this seal. For example, our charter states, "Sources of funding to the institute will be publicized including the name of the donor unless the donor requests anonymity. Expenses of the institute will be publicized down to the last cent, showing where all the spending went and for what purpose." Rule Number Two states, "To be a legal corporate member a name, mailing address, two email addresses, and a statement of whether the member is a rosacean or not a rosacean is required." While the RRDi doesn't have the volunteer editorial staff to accomplish what Snopes offers, we are doing our best to imitate what Snopes does (Snopes' staff motive is they are paid which we wish we could pay our editorial staff as much money as Snopes offers their staff, but alas, we are all volunteers and simply don't have the funds to pay our staff).
Over 1000 members agreed to these two rules when joining by registration which allows the individual as a legal non profit corporate voting member of the RRDi.
Anonymity
Many are under the impression when joining the RRDi as a voting member that giving out their contact information is an intrusion on their privacy (which is far from the truth since our privacy policy is solid). Also, it appears that many rosaceans have moved on to social media such as Facebook, Twitter, Instagram, or the like which seems to be less anonymous (frequently blog posters display their real name), and favors more transparency, so who can figure out why the yahoo groups and forum style posting (with cryptic [usually humorous] display names) are less used now in favor of transparent social media? Are you aware that when you join a private social media rosacea group that when you post any other member of the group can now view your profile? How private is that? Members of the RRDi can only view what you ALLOW to be viewed in your public profile. Only the RRDi staff can view your email address.
Usually most rosaceans want anonymity (read below how you can hide your true identity when joining the RRDi in the subheading, CHANGE YOUR PROFILE, and learn how to Change Your Display Name to a cryptic display name), but at the same time want transparency with the non profit organization they join while totally remaining anonymous as a member. There is a fine balance between anonymity and transparency and the RRDi allows you to have both if you join as a member and has given this a great deal of thought. We hope you agree this is how a non profit organization with members should have choices regarding their anonymity as well as having transparency when it comes to the organization they join.
Posting
How You Can Remain Anonymous while Posting in the RRDi Member Forum?
As mentioned above about Sign in with Apple, you can remain totally anonymous and completely private using your Apple ID when registering and hide behind a cryptic display name and also hide your email address totally.
Change Your Profile
You can completely remain anonymous when you post in our member forum. You can change your display name to something cryptic or clever. Only the staff at the RRDi has your membership information. The RRDi will NEVER display or disclose to anyone your profile and contact information without your permission. Our Privacy Policy is solid. And if you join only with your email address, the staff has no idea who you are. Your email address is your only ID, so, how much more anonymous can you get?
Change Your Display Name
The steps to change your display name are the following:
1. Login to your member account by looking for Existing User? Sign in (Top Right Corner of your screen)
(if you are having issues logging in please contact us, giving your first and last name, your email address used when registering your account as a voting member and we will assist you in being able to login to your member account. If you registered only with your email address just contact us with your email address and we will be happy to assist )
2. Once logged in you will see your display name in the top right corner. Click on the toggle and select ACCOUNT SETTINGS. In the left column of the account settings page look for DISPLAY NAME. In the column to the right of display name type in the field box under CHANGE DISPLAY NAME (to the left of the field box it says NEW DISPLAY NAME) change to whatever new display name you want to remain anonymous.
3. Click the SAVE button. Voila! You are now anonymous. No one knows who you are.
Hide Your Online Status
You may also want to hide your online status.
Sign in with Apple
The ultimate privacy is using Sign in with Apple.
Private Tapatalk Member Forum
We have now sponsored a private Rosaceans Tapatalk member forum which you can join. For more information.
Guests Allowed to Post
We now allow guests to post here without registering.
Reply to this Topic
There is a reply to this topic button somewhere on the device you are reading this post.
Mahalo
We also now have a mobile app for your device. Why not join now since you have a better understanding of our privacy policy.
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How To Calm A Skin Freakout by Liesa Goins, Refinery29
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Rosacea is a common chronic skin condition that manifests as recurrent inflammatory lesions. Long-term treatment is required to control symptoms and disease progression, with topical treatments being the first-line choice.
Ivermectin 1 % cream is a new once-daily (QD) topical treatment for the inflammatory lesions of rosacea, and it is important to compare the efficacy, safety, and tolerability of ivermectin with other currently available topical treatments.
Methods: A systematic literature review was performed from January 2011 to June 2015, with articles published prior to 2011 retrieved from a Cochrane review on rosacea. Randomized controlled trials of the topical treatment of adult patients with moderate-to-severe papulopustular rosacea were identified from electronic databases and trial registers, and supplemented with data from clinical study reports.
Mixed treatment comparisons (MTCs) were conducted to compare different treatments according to Bayesian methodology.
Results: 57 studies were identified, with 19 providing data suitable for MTC. Ivermectin 1 % cream QD led to a significantly greater likelihood of success compared with azelaic acid 15 % gel twice-daily (BID) [relative risk (95 % credible interval): 1.25 (1.14–1.37)], and metronidazole 0.75 % cream BID [1.17 (1.08–1.29)] at 12 weeks.
Ivermectin 1 % cream QD also demonstrated a significant reduction in inflammatory lesion count compared with azelaic acid 15 % gel BID [?8.04 (?12.69 to ?3.43)] and metronidazole 0.75 % cream BID [?9.92 (?13.58 to ?6.35)] at 12 weeks. Ivermectin 1 % cream QD led to a significantly lower risk of developing any AE or TRAE compared with azelaic acid 15 % gel BID [0.83 (0.71–0.97) and 0.47 (0.32–0.67), respectively].
Conclusions: Ivermectin 1 % cream QD appears to be a more effective topical treatment than other current options for the inflammatory lesions of rosacea, with at least an equivalent safety and tolerability profile, and could provide physicians and dermatologists with an alternative first-line treatment option.
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A recent paper stated the following:
"More women than men seek dermatological consultation for skin disease; our analysis of 149,614 patients seen for cutaneous issues (based on ICD-9 diagnosis codes) in outpatient clinics at Northwestern Medicine revealed a female to male ratio of 1.8:1."
"We surveyed 802 dermatological research articles from 2012 through 2013. No information about the sex of studied cells or animals was provided in 60% of papers."
J Invest Dermatol. Author manuscript; available in PMC 2016 Jul 19.
J Invest Dermatol. 2016 Jan; 136(1): 12–14.
doi: 10.1038/JID.2015.298
PMCID: PMC4950973
NIHMSID: NIHMS801795
Mind the Gap: Sex Bias in Basic Skin Research
Betty Y. Kong, Isabel M. Haugh, Bethanee J. Schlosser, Spiro Getsios, and Amy S. Paller -
For a long time, as noted by the late late Dr. Albert Kligman, rosacea was referred to as 'Acne Rosacea', which he said, "It is interesting that the original term for rosacea was "acne rosacea”, which has more features in common with acne than currently realized. If the “acne” portion had been retained in the later works, rosacea might have received much greater investigative attention." [1]
So what is the difference? Generally, rosacea is accompanied by flushing but not always and usually is the differentiating sign/symptom diagnosing rosacea. Acne (Vulgaris) is generally found in young adults and teenagers. Rosacea usually presents itself in later adulthood. Rosacea usually does not present with blackheads or comedones and is generally restricted to the nose, cheeks, chin and forehead. Acne can present itself also on the neck, chest and back as well as the facial region. One of the key differences is that acne treatments, such as benzoyl peroxide or salicylic acid usually exacerbates rosacea. Rosacea in about half the cases involve the eyes accompanied by redness in the ocular regions.
However, Acne Vulgaris can co-exist with rosacea.
A proper diagnosis needs to be from a physician. [2]
"The two diseases can be differentiated based on characteristic profile of the immune cell infiltrates at the periphery of disease lesions." [3]
Etcetera
Diagnosing Acne vs. Rosacea (Stanford Medicine 25)
End Notes
[1] A Personal Critique on the State of Knowledge of Rosacea
Albert M. Kligman, M.D., Ph.D.
publikation_kligman.pdf[3] PLoS One. 2021; 16(3): e0248650.
Elucidating the immune infiltration in acne and its comparison with rosacea by integrated bioinformatics analysis
Lu Yang, Yan-Hong Shou, Yong-Sheng Yang, Jin-Hua Xu -
Wallpaper article states the following:
"For founder Gígja Hlín, creating the line has been the culmination of a life-long obsession to treat her own and her sister’s irritable skin. Acne, rosacea and extreme sensitivity were not only some of the conditions Hlín tried to combat, but also visible scarring in between periods of calm skin. After experimenting with different combinations of over-the-counter products and prescription medications, Hlín became fixed on finding nourishing, natural ingredients that would do the job."
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Demodex Density, Immune Response and Oxidative Stress in Rosacea Patients
Sponsor:
Istanbul Training and Research Hospital
Collaborator:
Bezmialem Vakif University -
Timolol for the Treatment of Acne and Rosacea
"Timolol is a non-selective beta-adrenergic receptor antagonist indicated for treating glaucoma, heart attacks, hypertension, and migraine headache." Wikipedia
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Photodynamic Therapy for Papulopustular Rosacea
(study investigating the efficacy of ALA-PDT in treating papulopustular rosacea)
George Washington University
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A Study to Assess the Efficacy, Safety and Tolerability of DFD-04 ) (Topical Itraconazole 5% as a treatment for the papules and pustules of rosacea) in Germany
"Itraconazole (R51211), invented in 1984, is a triazole antifungal agent prescribed to patients with fungal infections." Wikipedia
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Medical Press article • DoctorsLounge • ooyuz beta •
The article concluded:
"The use of multiple, sequential light and laser sources with ALA-PDT for rosacea, while well tolerated, did not lead to statistically significant improvements in patient-reported efficacy. Although this retrospective study is limited by a small sample size with disparate patient numbers between groups and no physician-evaluated outcome criteria, it does demonstrate that multiple light sources with PDT can be safely used in a single session."
J Cosmet Dermatol. 2016 Jul 4. doi: 10.1111/jocd.12231.
Multiple sequential light and laser sources to activate aminolevulinic acid for rosacea.
Friedmann DP1, Goldman MP2, Fabi SG2, Guiha I2. -
UV Safety Month: Rosacea, endometriosis, fibromyalgia, high blood pressure, and allergies
By: Bel Marra Health | Health News | Sunday, July 03, 2016 -
How Your Gut Health Is Linked To Rosacea, by Cybele Fishman, MD, Yahoo Health • August 6, 2015
Also read the article,
Do You Have A Gut Feeling About Your Rosacea? -
image courtesy of Wikimedia Commons"Probiotic masks, creams or cleansers have been introduced by some cosmeceutical manufacturers based on early research, according to the release..."
Probiotic use improved acne, rosacea symptoms
by Whitney Bowe, MD, Healio Health, February 7, 2014Dr. Bowe serves as a volunteer for the RRDi MAC
Probiotics in acne and rosacea.
Cutis. 2013 Jul;92(1):6-7
Authors: Bowe WP
PMID: 23961518 [PubMed]The Beauty of Dirty Skin
Dirty Looks: The Secret to Beautiful Skin-------------------------------------------------
"Now, emerging research is finding that the benefits of probiotics may extend beyond the digestive tract to the skin. In fact, skin prone to acne or rosacea has shown improvement with daily probiotic use, giving dermatologists reason to consider supplementing traditional acne therapy with a dose of this beneficial bacteria."
Could probiotics be the next big thing in acne and rosacea treatments, AAD News
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"We’re mainly concentrated on the gut microbiome (because it seems to be linked to so many modern plagues like obesity, depression and loads of autoimmune diseases), but the skin microbiome is now coming into focus, too....I think in five years no one will use antibacterials anymore, but instead try to grow beneficial bacteria... we’re looking forward to prebiotic skincare becoming a wider-researched and formulated area of the beauty industry." Source
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"The skin microbiota in individuals with rosacea displays changes from that of healthy skin, suggesting that further studies examining a potential role for the skin microbiota in the pathophysiology of rosacea may be warranted.
Am J Clin Dermatol. 2019 Sep 09;:
Characterization and Analysis of the Skin Microbiota in Rosacea: A Case-Control Study.
Rainer BM, Thompson KG, Antonescu C, Florea L, Mongodin EF, Bui J, Fischer AH, Pasieka HB, Garza LA, Kang S, Chien A--------------------------------------------------
One paper describes using probiotic therapy ((Bifidobacterium breve BR03, Lactobacillus salivarius)) along with Oracea for scalp rosacea.
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Nonpathogenic E. coli strain Nissle 1917, also known as Mutaflor
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Clinical studies were conducted to determine the effect of lactobacillus extract on improvement of skin barrier and reduction of erythema from chemical irritant, skin microflora, and acne. Results show that lactobacillus extract was effective in reducing skin erythema, repairing skin barrier, and reducing skin microflora, thereby exhibiting an effective reduction in acne lesion size and erythema at 5%, but not at 1%.
J Cosmet Sci. 2012 Nov-Dec;63(6):385-95.
Physiological effect of a probiotic on skin.
Muizzuddin N, Maher W, Sullivan M, Schnittger S, Mammone T.------------------------------------------------
"Further investigation of the ocular surface microbiome, as well as the microbiome of other areas of the body such as the oral mucosa and gut, and their role in the pathophysiology of diseases is a significant, emerging field of research, and may someday enable the development of novel probiotic approaches for the treatment and prevention of ophthalmic diseases"
Yale J Biol Med. 2016 Sep; 89(3): 325–330. Published online 2016 Sep 30. PMCID: PMC5045141
Human Microbiota and Ophthalmic Disease
Louise J. Lu and Ji Liu-------------------------------------------------
"Oral probiotics can modulate the intestinal microbiome and have demonstrated to be efficacious in treating topical skin conditions, such as atopic dermatitis, acne and rosacea."
The Role of Topical Probiotics on Skin Conditions: A Systematic Review of Animal and Human Studies and Implications for Future Therapies.
Exp Dermatol. 2019 Sep 08;:
Knackstedt R, Knackstedt T, Gatherwright J -
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The principle author of this article is Anna Holmes, PhD. who volunteers on the RRDi MAC
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Why I Went On Accutane In My 30s, Yahoo Health, Refinery 29, July 4, 2016
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The RRDi is please to announce that Dana Buchbut, MD, has volunteered to serve on the RRDi MAC.
Rosacea Reduction
in Rosacea in the News
Posted
Rosacea Reduction, by Bob Manzo, Skinprint