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  1. "Rosacea is probably a collection of many different diseases that are lumped together inappropriately." Zoe Diana Draelos, MD. So there are a number of skin diseases that look like rosacea, which may be actually a catch-all diagnosis for any skin condition that is present in a patient with any of the rosacea phenotypes. However, if you are diagnosed with one of the rosacea variants or mimics you may find a more appropriate treatment since having a correct diagnosis certainly goes a long way to finding relief. It would be good to rule out any of the rosacea mimics listed in a differential diagnosis list (which is even a much longer list). But the list below is the 'official rosacea mimic list' (14): Atopic Dermatitis (Eczema) Dermatomyositis Erysipelas Erythromelalgia Erythromelanosis follicularis faciei et colli (EFF) Gram-Negative Folliculitis Keratosis Pilaris Rubra Faceii Lupus Lupoid Rosacea Perioral Dermatitis PF Pityriasis rosea [PR] Seborrheic Dermatitis Telangiectatic Photoaging (TP) Note: If you have another skin condition that is a rosacea mimic that we don't have on this official list, please reply in this thread and we will consider whether to add it.
  2. The RRDi recognizes Rosacea Lymphedema (Morbihan Disease or morbus Morbihan) as a rosacea variant. [1] Also known as rosacea lymphoedematousn or persistent solid facial edema [2], Persistent edema of rosacea or Chronic upper facial erythematous edema. [3] "Morbihan disease (MD) is a rare entity. Its nosography is unclear and its therapeutic management is difficult....the patient was put on isotretinoin and furosemide with slight improvement. The particularity of our observation lies in the rarity and especially in the therapeutic difficulties encountered during this disease. [4] It is also known as Morbihan syndrome, "a rare entity that more commonly affects women in the third or fourth decade of life." [4] Treatments Tripterygium wilfordii Notes [1] "Morbihan syndrome is a rare entity that more commonly affects women in the third or fourth decade of life. It is considered a special form of rosacea and its pathogenesis is not fully known..." An Bras Dermatol. 2016 Sep-Oct; 91(5 Suppl 1): 157–159.doi: 10.1590/abd1806-4841.20164291PMCID: PMC5325027Morbihan syndrome: a case report and literature reviewRossana Cantanhede Farias de Vasconcelos, Natália Trefiglio Eid, Renata Trefiglio Eid, Fabíolla Sih Moriya, Bruna Backsmann Braga, and Alexandre Ozores Michalany "Morbihan disease, also known as rosacea lymphedema, is a rare persistent form of lymphedema that is associated with the disease of rosacea." Phys Ther. 2018 Dec 18; Complete Decongestive Therapy Is an Option for the Treatment of Rosacea Lymphedema (Morbihan Disease): Two Cases. Kutlay S, Ozdemir EC, Pala Z, Ozen S, Sanli H [2] "Morbihan disease is a rare entity. Its place in the nosography is uncertain. Sometimes called persistent solid facial edema, sometimes rosacea lymphoedematous. It may correspond to a particular clinico-pathological form of lymphoedema or rosacea." Pan Afr Med J. 2018; 30: 226. Published online 2018 Jul 26. doi: 10.11604/pamj.2018.30.226.14440 PMCID: PMC6295304; PMID: 30574244 Morbihan disease: treatment difficulties and diagnosis: a case report Alaa Aboutaam,& Fouzia Hali, Kenza Baline, Meryem Regragui, Farida Marnissi, and Soumiya Chiheb [3] Persistent edema of rosacea, Wikpedia [4] Pan Afr Med J. 2018 Jul 26;30:226. doi: 10.11604/pamj.2018.30.226.14440. eCollection 2018. Morbihan disease: treatment difficulties and diagnosis: a case report. Aboutaam A, Hali F, Baline K, Regragui M, Marnissi F, Chiheb S. [4] Morbihan syndrome
  3. Clinical Case Reports, states, "Kleresca® biophotonic platform utilizing fluorescent light energy effectively decreased the inflammatory and erythematous reaction common in rosacea subtypes 1, 2, and 3. Kleresca® may be considered as a single treatment for rosacea, targeting multiple features, or combined with invasive methods for an enhanced normalizing and healing profile of the skin." [1] The only anecdotal report I have found is at Reddit, Camo645, which we will keep an eye on to see if it works for him. End Notes [1] Clin Case Rep. 2018 Dec;6(12):2385-2390 Fluorescent light energy: Treating rosacea subtypes 1, 2, and 3. Sannino M, Lodi G, Dethlefsen MW, Nisticò SP, Cannarozzo G, Nielsen MCE
  4. This is an unusual treatment for rosacea, since we hear complaints from rosaceans about fluorescent lights, there is now a treatment for rosacea using fluorescent light, Klereska®, reported in Clinical Case Reports, that states, "Kleresca® biophotonic platform utilizing fluorescent light energy effectively decreased the inflammatory and erythematous reaction common in rosacea subtypes 1, 2, and 3. Kleresca® may be considered as a single treatment for rosacea, targeting multiple features, or combined with invasive methods for an enhanced normalizing and healing profile of the skin." [1] End Notes [1] Clin Case Rep. 2018 Dec;6(12):2385-2390 Fluorescent light energy: Treating rosacea subtypes 1, 2, and 3. Sannino M, Lodi G, Dethlefsen MW, Nisticò SP, Cannarozzo G, Nielsen MCE
  5. 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
  6. Skin Pharmacol Physiol 2007;20:199–210 DOI: 10.1159/000101807 Beneficial Long-Term Effects of Combined Oral/Topical Antioxidant Treatment with the Carotenoids Lutein and Zeaxanthin on Human Skin: A Double-Blind, Placebo-Controlled Study P. Palombo, G. Fabrizi, V. Ruocco, E. Ruocco, J. Fluhr, R. Roberts, P. Morganti
  7. From 1998 through 2005 there was an incredible volunteer spirit that drove the formation of the RRDi. Since 2005 the force that motivated so many to bring together rosacea sufferers into a non profit organization has dwindled to just a flickering wick. Why is it that rosaceans (rosacea sufferers) don't volunteer anymore? Andy Seth, an entrepreneur, has a blog post, The Way We Think About Volunteering Is Dead Wrong, states, "research shows that the happiest volunteers are those who give 2 hours per week. That’s it. 2 hours." If the RRDi could get any rosacean to volunteer 2 hours a weeks, that would be miraculous. Are there volunteers who actually volunteer that many hours a week? There must be, otherwise the study is bogus. If we could get any RRDi member to just post their thought or experience with rosacea for 15 minutes a week that would be incredible. We have dotted the RRDi forum with requests to RRDi members to simply post anything and the 1200 plus members as of this date are simply miniscule when it comes to posting. Getting our members to post is a challenge. If you have some insight how to get our members to post, we are all ears. You can reply to this post and comment to your heart's content. Of course, that is the issue, the RRDi members' hearts are not content to post. Why is that? The research Mr. Seth referred to may have been the study commented on by the American Psychological Association that reports, "Volunteers lived longer than people who didn't volunteer if they reported altruistic values or a desire for social connections as the main reasons for wanting to volunteer, according to the study." This same study, Andrea Fuhrel-Forbis, the co-author concludes: "It is reasonable for people to volunteer in part because of benefits to the self; however, our research implies that should these benefits to the self become the main motive for volunteering, they may not see those benefits." One of the benefits is what is called 'helper's high' which has been scientifically confirmed. [1] Of course, if a RRDi member who has rosacea helps another rosacea sufferer that would be the basis for receiving the 'helper's high.' Rosaceans supporting rosaceans. In trying to understand why volunteering amongst rosaceans has continued on this downward course, and googling this for an answer, The Guardian has an article about this subject and concluded, "But while the benefits of volunteering are clear, there is worrying evidence that the people who could benefit most from giving their time are precisely those least likely to be involved." Volunteer Match (which the RRDi has joined) has an article on this subject and states that the Bureau of Labor Statistics Report shows "that volunteer rates have been steadily declining for over a decade," [2] and comments, "There’s an endless supply of reasons that could explain why volunteer rates are falling. Last year, upon seeing the results, VolunteerMatch President Greg Baldwin argued that volunteer rates are falling because we as a nation don’t invest enough resources in the nonprofit sector. Without resources, nonprofits simply don’t have the capacity to effectively engage volunteers. Someone in the comments of that post argued that "the falling rates can be attributed to the fact that more people are overworked with less time on their hands. Others say people are simply lazier than they used to be. I personally think it could be attributed to a shifting trend away from community involvement, due to the emergence of online communities, young people moving more often, and other factors." [3] In the above article mentioned [3] there are a number of comments and I think Ron from Florida's [April 16, 2016] comment is insightful: "When I was younger, volunteering and giving back was part of life. It was something that we did and didn’t think twice about it. I don’t see that same philosophy these days. It’s to the point that schools here require some level of community service to complete your graduation requirements." Stem Learning reports, "It is suggested that stagnating volunteer numbers and in some areas, reducing numbers of volunteers, along with cuts made by local authorities falling disproportionately upon the volunteering sector funding, suggests a potential fall in people volunteering per se. Furthermore the 2015/16 Community Life survey, highlighted 14.2 million people formally volunteered at least once a month in 2014/15 and although rates are mostly unchanged, it appears irregular volunteering appear to show a 5% drop!" Carey Nieuwhof lists 6 REASONS YOU'RE LOSING HIGH CAPACITY VOLUNTEERS. I don't see how those six reasons are related to the RRDi, but I am all ears to anyone who can point out to me what the RRDi isn't doing or doing with regard to Carey's six reasons that we could improve. Our page on volunteering covers most of what Carey is discussing. Without a doubt this explains the situation. Any thoughts on this subject would be much appreciated. Online Volunteering Dr. Natalie Hruska says that the studies indicating a drop in volunteering over the past decade "do not factor in kinds of volunteerism today, like virtual volunteering" and writes there is "a necessity to redefine what volunteerism is and how we understand it today." [4] Volunteering Statistics "About 25 percent of Americans volunteered in 2015, according to federal data, compared to a global average of just 10 percent." [5] "The volunteering rate has declined slightly from 27 percent in 2002 despite the efforts of many American leaders..." [5] A Long and Winding Road Volunteering for the RRDi to help fellow rosaceans is a long and winding road that leads to your door, which is without a doubt, the most difficult door to open. Can you open that door and join us to find the cure for rosacea? End Notes [1] Helper's High: The Benefits (and Risks) of Altruism, Psychology Today [2] According to the 2015 report, 24.9% of the U.S. population over the age of 16 volunteered at least once in the past year. In 2011, this percentage was 26.8%, and in 2005 it was 28.8%. "The volunteer rate declined by 0.4 percentage point to 24.9 percent for the year ending in September 2015..." VOLUNTEERING IN THE UNITED STATES — 2015, U.S. Bureau of Labor Statistics, Thursday, February 25, 2016 [3] The U.S. Volunteer Rate Is Still Dropping. Why?, Tess Srebro | March 25, 2016 | Industry Research | Engaging Volunteers, Volunteer Match [4] Dr. Natalie Hruska, April 12, 2016 POST to the article in end note 2. Dr. Hruska had a YouTube video that discussed online volunteering but it is no longer available. Dr. Hruska has written a book on this subject, Managing the First Global Technology: Reflections on a relevant application of the Internet, in Kindle or Paperback. [5] How to get more Americans to volunteer, The Conversation Civil society organization workforce as a share of the economically active population, by country, 1995-2000, John Hopkins Center for Civil Society Studies
  8. Dr. Ben Johnson, RRDi MAC Member, discusses a holistic approach to treating rosacea in an interview with Lori Crete, Licensed Esthetician, Spa 10.
  9. I had a mole on my forehead that I was told that 3% Hydrogen Peroxided might remove, so I dabbed a little on the mole and after some weeks it did indeed at least lighten the mole some. However, I noticed that the rosacea or seb derm on my forehead that was near the mole also cleared up. So I experimented and began putting 3% Hydrogen Peroxide on my red spots on my forehead and after some days they began to fade away too! Since then I have been putting 3% Hydrogen Peroxide on all my facial rosacea red spots and letting it dry, then adding the ZZ cream, just before bed and this regimen seems to really work for me. It does sting so it is doing something to my skin. I did this for about a month and now have stopped since it is a bit harsh on my skin. So maybe you should be careful trying this. I also have taking the Lutein/Zeazanthin 40 mg capsule each day. I also avoid sugar as much as possible and eat very low carbohydrate. I have photos and explain in detail my treatment in this thread. I haven't used 3% Hydrogen Peroxide anymore because it doesn't really work long term. Maybe short term works for a while, but long term now way. So I have dropped the 3% Hydrogen Peroxide. You may want to DILUTE the 3% Hydrogen Peroxide further in case you are sensitive to it. One report below shows you how:
  10. image courtesy of Wikimedia Commons Understanding the psychology of treating rosacea can better help you find a way to control your rosacea, since emotional pain can be a huge factor in your life. To complete the picture, you should have a basic understanding of the placebo/nocebo effect in treatments for your rosacea. Your mind plays a significant factor in whether a treatment for rosacea works for you or not. The placebo/nocebo effect is real and you need to understand why treatments for rosacea usually have a double blind, placebo controlled, peer reviewed clinical study (the current term is Randomized controlled trial). What is the placebo effect? Below are some helpful articles you can read about to help you better treat your rosacea using the placebo effect for your benefit and avoiding the nocebo effect which is negative. We all have a certain amount of bias towards a rosacea treatment which is sometimes based upon real or erroneous facts, which may explain what we have dubbed the X-Factor in rosacea. This bias has a huge bearing on the placebo/nocebo effect. An interesting article in The New York Times Magazine states, "Enough people reported good results that patients were continually lined up at Mesmer’s door waiting for the next session." Dr. Mesmer is where the word mesmerize comes from. The article explains how 'double blind' placebo controlled clinical studies originated and why drug companies have to differentiate between a drug's actual pharmaceutical effect and the placebo effect. I particularly like this paragraph in the article: "What if, Hall wonders, a treatment fails to work not because the drug and the individual are biochemically incompatible, but rather because in some people the drug interferes with the placebo response, which if properly used might reduce disease? Or conversely, what if the placebo response is, in people with a different variant, working against drug treatments, which would mean that a change in the psychosocial context could make the drug more effective? Everyone may respond to the clinical setting, but there is no reason to think that the response is always positive. According to Hall’s new way of thinking, the placebo effect is not just some constant to be subtracted from the drug effect but an intrinsic part of a complex interaction among genes, drugs and mind. And if she’s right, then one of the cornerstones of modern medicine — the placebo-controlled clinical trial — is deeply flawed."What if the Placebo Effect Isn’t a Trick?, The New York Times Magazine "Evidence for the relevance of placebo and nocebo effects in dermatology is also increasing...A large proportion of the success or failure of dermatological treatment can be explained by factors other than the treatment mechanisms themselves. Placebo and nocebo effects, in particular, strongly contribute to treatment outcomes, with explained variances comparable to, for example, effects of analgesics or antidepressants....the placebo responses and positive expectations of patients will only endure if they are based on trust in a long‐term authentic relationship. Highly optimistic promises followed by limited effects will probably result in nocebo instead of placebo effects." [1] "A nocebo effect is said to occur when negative expectations of the patient regarding a treatment cause the treatment to have a more negative effect than it otherwise would have." Wikipedia "By definition, a nocebo effect is the induction of a symptom perceived as negative by sham treatment and/or by the suggestion of negative expectations. A nocebo response is a negative symptom induced by the patient's own negative expectations and/or by negative suggestions from clinical staff in the absence of any treatment. The underlying mechanisms include learning by Pavlovian conditioning and reaction to expectations induced by verbal information or suggestion. Nocebo responses may come about through unintentional negative suggestion on the part of physicians and nurses. Information about possible complications and negative expectations on the patient's part increases the likelihood of adverse effects. Adverse events under treatment with medications sometimes come about by a nocebo effect." This same article concluded, "Communication training in medical school, residency training, and continuing medical education would be desirable so that physicians can better exploit the power of words to patients' benefit, rather than their detriment." [2] "Patient expectations, including those generated by the informed consent process, can have a large influence on the side effects that patients feel after starting a new medical treatment....Medical professionals' own negative beliefs about a treatment, especially generic drugs, may further enhance patients' expectations of adverse effects. The news media may also influence expectations, particularly when media attention is directed towards a health or medication scare." [3] Twenty-nine internationally recognized placebo researchers participated in the 1st Society for Interdisciplinary Placebo Studies (SIPS) conference in 2017 and published a paper in 2018 that states, "There was consensus that maximizing placebo effects and minimizing nocebo effects should lead to better treatment outcomes with fewer side effects. Experts particularly agreed on the importance of informing patients about placebo and nocebo effects and training health professionals in patient-clinician communication to maximize placebo and minimize nocebo effects." [4] "Placebo/nocebo effects are difficult to disentangle from the natural course of illness or the actual effects of a new drug in a clinical trial. There are known strategies to enhance clinical results by manipulating expectations and conditioning." [5] In one study, "106 participants who had all received placebo injection, N = 20 (18.9%) wrongly believed they had received endotoxin and were thus considered as nocebo responders. Nocebo responders reported significantly more bodily sickness symptoms, suggesting that the perception of bodily symptoms affected perceived treatment allocation." [6] "The aim of this review is to evaluate the placebo effect in the treatment of anxiety and depression. Antidepressants are supposed to work by fixing a chemical imbalance, specifically, a lack of serotonin or norepinephrine in the brain. However, analyses of the published and the unpublished clinical trial data are consistent in showing that most (if not all) of the benefits of antidepressants in the treatment of depression and anxiety are due to the placebo response, and the difference in improvement between drug and placebo is not clinically meaningful and may be due to breaking blind by both patients and clinicians. Although this conclusion has been the subject of intense controversy, the current article indicates that the data from all of the published meta-analyses report the same results. This is also true of recent meta-analysis of all of the antidepressant data submitted to the Food and Drug Administration (FDA) in the process of seeking drug approval. Also, contrary to previously published results, the new FDA analysis reveals that the placebo response has not increased over time. Other treatments (e.g., psychotherapy and physical exercise) produce the same benefits as antidepressants and do so without the side effects and health risks of the active drugs. Psychotherapy and placebo treatments also show a lower relapse rate than that reported for antidepressant medication." [7] "The exact biological mechanisms of this process are not known, but cholecystokinergic and dopaminergic systems, changes in the HPA axis, and the endogenous secretion of opioids are thought to be involved." [8] "In addition to these mechanisms, several other influential elements are at work during the placebo effect. These include the patient-physician relationship, patient’s psychological state and personality, the severity of the medical condition, and environmental circumstances. The patient's genetics may also influence the degree of placebo effect. Researchers are studying how genes can influence the placebo effect in various pathways, including the dopamine, opioid, serotonin, and endocannabinoid systems. Evidence also indicates that the therapeutic benefits of the placebo effect may not impact the pathophysiology of the underlying disease being studied, but rather address the subjective self-appraised symptoms of the disease. Elucidating the underlying mechanisms that mediate the placebo effect may prove beneficial to clinical practice and drug development." [9] "In randomized clinical trials, patients in the placebo group invariably improve more than individuals outside of the trial who are treated with standard therapies. The nocebo effect, less well known, consists of undesirable responses to therapy resulting from negative patient expectation. Thus, if a physician emphasizes possible adverse events when discussing an impending therapeutic intervention, it is more likely that the patient will experience them." [10] "Here is a possibly apocryphal anecdote that I was told many years ago when I was working in Massachusetts. A patient with hypertension complained to his or her physician that all previous attempts to control high blood pressure had failed because of “side effects” caused by the various drugs that had been tried. The physician decided to try prescribing a very-low daily dose of hydrochlorothiazide (HCTZ) as the initial therapeutic strategy. At the next office visit, the patient informed the doctor that he or she had stopped taking HCTZ because of severe pain located on one “side” of his or her body. The patient said, “I definitely developed the ‘side effects’ that you said might happen.” This amusing story is an example of the nocebo effect at work!" [10] End Notes [1] Exp Dermatol. 2017 Jan; 26(1): 18–21. Using the placebo effect: how expectations and learned immune function can optimize dermatological treatments Andrea W.M. Evers [2] Dtsch Arztebl Int. 2012 Jun;109(26):459-65. doi: 10.3238/arztebl.2012.0459. Epub 2012 Jun 29. Nocebo phenomena in medicine: their relevance in everyday clinical practice. Häuser W, Hansen E, Enck P. [3] Postgrad Med J. 2013 Sep;89(1055):540-6. doi: 10.1136/postgradmedj-2012-131730. Epub 2013 Jul 10. The nocebo effect: patient expectations and medication side effects. Faasse K1, Petrie KJ. [4] Psychother Psychosom. 2018;87(4):204-210. doi: 10.1159/000490354. Epub 2018 Jun 12. Implications of Placebo and Nocebo Effects for Clinical Practice: Expert Consensus. Evers AWM, Colloca L, Blease C, Annoni M, Atlas LY, Benedetti F, Bingel U, Büchel C, Carvalho C, Colagiuri B, Crum AJ, Enck P, Gaab J, Geers AL, Howick J, Jensen KB, Kirsch I, Meissner K, Napadow V, Peerdeman KJ, Raz A, Rief W, Vase L, Wager TD, Wampold BE, Weimer K, Wiech K, Kaptchuk TJ, Klinger R, Kelley JM. [5] Clin Ther. 2017 Mar;39(3):477-486. doi: 10.1016/j.clinthera.2017.01.031. Epub 2017 Feb 23. The Placebo and Nocebo Phenomena: Their Clinical Management and Impact on Treatment Outcomes. Chavarria V, Vian J, Pereira C, Data-Franco J, Fernandes BS, Berk M, Dodd S. [6] J Child Adolesc Psychopharmacol. 2019 Aug 1. doi: 10.1089/cap.2019.0022. [Epub ahead of print] The Impact of Placebo Response Rates on Clinical Trial Outcome: A Systematic Review and Meta-Analysis of Antidepressants in Children and Adolescents with Major Depressive Disorder. Li Y, Huang J, He Y1, Yang J, Lv Y, Liu H, Liang L, Li H, Zheng Q, Li L. [7] Front Psychiatry. 2019 Jun 13;10:407. doi: 10.3389/fpsyt.2019.00407. eCollection 2019. Placebo Effect in the Treatment of Depression and Anxiety. Kirsch I. [8] Cancer Metastasis Rev. 2019 Jun;38(1-2):315-326. doi: 10.1007/s10555-019-09800-w. It is not just the drugs that matter: the nocebo effect. Wojtukiewicz MZ, Politynska B, Skalij P, Tokajuk P, Wojtukiewicz AM, Honn KV. [9] StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2019 Mar 23. Placebo Effect. Munnangi S, Angus LD. [10] The American Journal of Medicine Placebo and Nocebo Effects, Medication Bias, and Hearsay Joseph S. Alpert, MD
  11. Admin

    Rosacea Diet

    Rosacea Diet Triggers always come up in a discussion of rosacea. Just about every dermatologist parrots the NRS list of proposed rosacea diet triggers, especially physicians explain to their patients to avoid "spicy food and wine." There is a much longer trigger factor list that include other proposed food and drink triggers. An interesting read is Liver, Yogurt, Sour Cream, Cheese, Eggplant, and Spinach that discusses this subject. There are some who can eat anything and their skin looks great. This is probably due to genetics. There is a theory that rosacea is genetic and we have simply been dealt with a bad set of rosacea prone genes. Whether diet really does affect rosacea or acne, do you think that eating a diet with the proper proportion of protein, fat, carbohydrate and essential nutrients improves health? If a person has a poor diet without a proper proportion of the three food groups and lacks the essential nutrients, would that effect the skin? The Rosacea Diet that I have proposed since 1999 you can obtain for free if you join the RRDi and mention when joining you want a free copy and explains in detail what to ingest and what to avoid for just 30 days to see if this improves your skin. Most rosacea sufferers will not do this because it means reducing your carbohydrate intake to 30 grams a day for 30 days, a task that very few are willing to undertake because sugar is addictive. Also due to a misunderstanding on what carbohydrate actually is, many think that carbohydrate is an essential nutrient which is far from the truth. The Rosacea Diet is simply a short test that clearly shows whether reducing carbohydrate for thirty days helps clear your skin. After this simple test one can modify carbohydrate intake according to one's individual situation and may be able to use this method to help control your rosacea, because in RF you will find that the majority will tell you that diet does indeed affect rosacea and acne. While there are a few who claim diet doesn't have anything to do with rosacea, these are definitely in the minority. It would be good to substantiate this in a poll, but the NRS has already done that with its survey asking what food and drink triggers your rosacea and came up with the 'official' diet trigger list which all the dermatologists parrot, namely 'spicy food and wine.' Did the NRS even mention sugar or carbohydrate in its poll? No. The NRS avoids mentioning sugar or carbohydrate as a rosacea diet trigger. The RRDi does list sugar and carbohydrate as rosacea diet triggers.
  12. Thanks Apurva Tathe for your tips.
  13. If you have a question or concern with your rosacea please post here and get help from our community of rosaceans. If you can volunteer to post to help fellow rosaceans that would be one of the best things you can do. Read this post about volunteering.
  14. The NRS Weblog reports on October 22, 2018, "Over the course of nearly two decades since the National Rosacea Society (NRS) issued its first research grants, this program has fostered dramatic strides in the understanding of rosacea, and has now awarded more than $1.5 million to date. Funded exclusively by donations from individuals, the NRS research grants program was established in 1999 to provide support for medical research into the potential causes and other key aspects of this poorly understood disorder that may lead to improvements in its treatment, care and potential cure." [1] [bold italics added] The report then notes some of the notable studies funded with more than $1.5 million dollars, which some of these are quite good. The NRS states clearly on this blog report that all the money spent on these studies came from individual donations from members of the NRS. However, let's really look at the math on this. The RRDi has kept an accurate record of all the donations from 1998 thru 2016 and the total amount reported donations to the NRS amounts to $13,898,646. [2] The total amount reported by the NRS spent on rosacea research studies during this same period amounts to $1,403,031, which is a difference of about $96,969. You might minimize this difference but $96K to the RRDi is a big deal. If the RRDi had $96K we would spend 90% on rosacea research studies. But what is a even a bigger deal is that the NRS reports over this same period that only 10.09% of the amount donated to the NRS comes from public support (what the NRS reports in the weblog articles as 'exclusively by donations from individuals). So what does does the math now reveal? $1,402,378.38 is the actual amount reported by the NRS to the Internal Revenue Service. That is a difference of $97K, which is closer to the same amount in the previous paragraph. [2] Ok, just a $1K difference, but it helps confirm the math. So what's the big deal you ask? Go back and look at the total amount of donations reported by the NRS during this time period. Yes, almost $14 million. Look again at how much money was spent on rosacea research studies? Actually $1.4 million. So how much money of the TOTAL donations was spent on rosacea research? You do the math. Ok, I will do it for you: 10%. So for every dollar donated to the NRS ten cents is spent on rosacea research. One might ask, where did the other 90% of the donations come from when only 10% comes from public support? If you look on the NRS website home page, scroll down till you read, "Maintenance of this website in 2018 is supported by unrestricted educational grants from the following companies so that individual donations can be used to fund research" and notice the list of companies who sponsor the NRS, pharmaceutical corporations with a vested interest in rosacea. However, the NRS reports that all the rosacea research studies are "Funded exclusively by donations from individuals." So what are these educational grants funded by these pharmaceutical companies? There are none listed that are sponsored by any pharmaceutical companies shown on the NRS website. Why not ask the NRS? Better yet, why not ask the NRS for a copy of the Form 990 for 2017 that you are entitled to review yourself and see where all the money is spent. Yes, it takes time to read a Form 990 but you can get the gist of the entire report in about a twenty minute review. For example, here is a review of the 2016 Form 990. If it is really true that the public support reported amounts to $1.4 million, just think about what rosacea research could have been accomplished if more money was spent on rosacea research rather than the 10 percent the NRS spent of its total donations? Say 20 percent? Or what about 50%? How much should a non profit organization for rosacea spend on rosacea research of its total donations? If you are meditating on all this, you might ask, where did most of the 90 percent of the donations go to? What was most of the donations the NRS received over this period spent on? The answer is two private contractors, that are owned by the president of the NRS, Sam Huff. And the most surprising thing about all this is that members of the NRS don't care how the NRS spends its donations and keeps giving the NRS donations. I still haven't figured out why the members of the NRS keep donating but it is obvious they love the NRS and how it spends its donations. For more info. End Notes [1] NRS Research Grants Program Drives Key New Discoveries Posted: 10/22/2018, NRS Weblog [2] NRS Form 990 Spreadsheet 1998 thru 2016
  15. The NRS has funded a study that differentiates the difference between Subtype 1 (erythematotelangiectatic) rosacea and Telangiectatic Photoaging (TP), a rosacea mimic which is a condition with visible blood vessels from sun damage. The NRS report on this subject states, "mast cell tryptase, an enzyme released by mast cells that is associated with inflammation, was found to be four times higher in subtype 1 rosacea skin than in TP skin, and 25 times higher than in the control group. Rosacea skin also showed significantly more evidence of matrix remodeling, a skin damage process leading to greater vasodilation." [1] It should be noted that the subtype classification of rosacea has been improved with the new phenotype classification so that Subtype 1 has been split into two distinct phenotypes, Phenotype 2 and Phenotype 3. End Notes [1] New Study Defines Rosacea and Damage From the Sun Posted: 06/15/2015, NRS Weblog
  16. A more recent study concludes: "Increased caffeine intake from coffee was inversely associated with the risk of incident rosacea. Our findings do not support limiting caffeine intake as a means to prevent rosacea. Further studies are required to explain the mechanisms of action of these associations, to replicate our findings in other populations, and to explore the relationship of caffeine with different rosacea subtypes." See end note 3 in the original post of this thread for the source.
  17. Thanks Apurva, and also thanks for your article on co-existence.
  18. Hi Apurva, I was reluctant to download a docx file since it is an odd way of posting instead of simply copying and pasting your document into the post? I checked to see if your file contained any viruses or malware by using VirusTotal and it passed, so I opened the file and I am copying and pasting your article here for the benefit of everyone else not having to go through this process. It might be best to simply write your posts. Here is the contents of your article below: begin article___________ Co-existence of Rosacea, Seborrheic dermatitis and Blepharitis There have been a lot of reports on accounting other chronic skin conditions with rosacea and it is true that you can have multiple conditions simultaneously with rosacea. I have experienced rosacea, seborrheic dermatitis and blepharitis together with the combination of erythema and telangiectasia. The very first time this condition appeared as a lesion on half part of nose and cheek and then covered the other part of the face with having scaly torn skin and inflamed eyes. After years of my experience and dealing with these conditions, the symptoms include : Swollen flushed skin, visible dilated blood vessels with stinging and burning sensation on face. SD can cause skin scaly and flaky and can burn with itch and appears mostly on front hair line,forehead and eyebrows that if you itch the flaky and crusty skin falls off like dandruff. Blepharitis usually involves upper eyelid and causes inflamed eyelids, teary red eyes and the most important visual aspect is greasy dandruff like scales form on eyelashes covering half of it. The conditions can go beyond your cheeks and nose and affect earlobes and chin area and can cause flaky and rough chin area with small bumps. The flare ups can last anywhere from few minutes to one day or to one month and they again come back but when it goes you can feel the temperature decrease but it can leave red bumps that looks like acne but gradually the red appearance goes with time but it waxes and wanes. Co-existence : The occurrence of other chronic inflammatory diseases like seborrheic dermatitis and blepharitis are common in patients with rosacea and the good news is, the treatment of other condition does not aggravate the signs and symptoms of rosacea and lessen the flare ups in the meantime. Blepharitis is an inflammation of the eyelids in which the base of the eyelids are swollen and red and flaky greasy like crusts occur around the eyelashes with frequently mildly sticking eyelids and flaky dandruff of eyebrows sometimes called seborrheic blepharitis.(1) It is reported that demodex can worsen the condition of rosacea but it can also aggravate the condition of seborrheic blepharitis.(2) SD can typically occur as rash on the face and a sheet of lesion on back and middle chest area and middle and underneath breast lines. The underlying cause of seborrhoeic dermatitis is not clear, but a type of yeast called Malassezia furfur is involved.(3) I will emphasize these conditions thoroughly in later posts but for now I will explain the treatment I had with these three conditions : When my doctors diagnosed these three conditions, first they prescribed me low dose oral doxycycline capsules (100mg) daily at night. 1. Doxycycline is an antibiotic used for treating bacterial infections.The drug is also sold under the brand names Oracea, Doryx, Monodox, Periostat, and Vibramycin. Doxycycline is in a class of medications called tetracyclines, and it's a broad-spectrum antibiotic, it works against a wide range of bacteria.This medication is used to prevent malaria and treat a wide range of infections, including: skin infection.(4,5) Side effects: stomach upset, constipation, nausea, heavy head. 2. You can apply topical metronidazole gel 0.75% on the affected skin area. Apply a thin layer of gel once or twice daily.I used to apply once at night daily. It is an antibiotic and it works by decreasing redness and inflammation by stopping the growth of certain bacteria and parasites.This antibiotic treats only certain bacterial and parasitic infections. It will not work for viral infections. (6) Side effects : burning and eye irritation if it gets close to the eyes. 3. Ketoconazole 2 % and Zinc pyrithione 1 % (Shampoo) for the fungal and yeast infections of the skin. Ketoconazole an active ingredient works by interfering and weakening with the formation of the fungal cell membrane. It better works with seborrheic dermatitis and blepharitis. Thoroughly apply on wet hair and massage and leave it for 5 minutes and then rinse it out. It does not make lather like other shampoos. Take a drop on finger, rub it and apply gently on eyelashes on tightly closed eyes and rinse it properly. With 8 weeks of proper use twice in a week completely cured me with SD and blepharitis. Side effects : itchy and dry scalp 4. If you have dermatitis on your chest and breast lines and back, you can use the composition of Boric acid and Clotrimazole cream together. It works by reducing inflammation and inhibiting the growth of fungi. Apply a thin layer of this base and rub until it absorbs completely twice or thrice daily. I applied this on my front and back area for four to five days and it worked wonder and the lesions gradually disappeared. Note : before taking any above medication consult your doctor or physician and alcohol should not be consumed during any medication it can worsen the condition of rosacea and if you are pregnant or on breast-feeding and any other condition like diabetes or heart problem, take this medications as directed by your doctor. Instead relying on oral and topical steroids my doctor prescribed me with bacterial and fungal medications because taking steroids for SD and blepharitis can exacerbate the condition of rosacea and relying on antibiotics and anti-fungal treatments can lessen the condition of SD and blepharitis and keep the rosacea at bay. References : https://www.aoa.org/patients-and-public/eye-and-vision-problems/glossary-of-eye-and-vision-conditions/blepharitis.(1) http://eyewiki.aao.org/Blepharitis.(2) http://www.londoneyeunit.co.uk/services/blepharitis/.(3) https://www.everydayhealth.com/drugs/doxycycline.(4) https://www.webmd.com/drugs/2/drug-8648-7073/doxycycline-hyclate-oral/doxycycline-oral/details.(5) https://www.webmd.com/drugs/2/drug-6426/metro end article_________________
  19. Thanks so much for your post, very detailed and informative and without a doubt will help many.
  20. Leo Pharma has announced it is purchasing Finacea, as well as other dermatological treatments from Bayer according to this news release.
  21. Nasdaq reports "Aclaris Therapeutics to Acquire Worldwide Rights to RHOFADE® from Allergan." Aclaris originally owned Rhofade and sold it to Allergan and is now buying it back.
  22. Besides still taking the Lutein/Zeazanthin treatment, I use the ZZ cream about four or five nights a week on some red spots, however, in addition, before I do apply the ZZ cream, I have been applying a small amount (half teaspoon) of 3% hydrogen peroxide from Walmart (97 cents a bottle) to some red spots and let this dry before applying the ZZ cream. I have noticed when applying the 3% hydrogen peroxide it doesn't sting but after it dries and deeply penetrates the skin I get some stinging which is odd to me but indicates it is finding something down deeper in my skin to work on. The results have been good so I am updating my photos below today:
  23. smart2005ct, That is such good news you are seeing Percy Lehmann, MD, who volunteers on the RRDi MAC. Keep us posted on your progress.
  24. Galderma has released a report, Rosacea: Beyond the visible, which is an "An open letter to doctors treating rosacea," answering seven questions proposed about treating rosacea. Galderma sponsored a 'global survey of rosacea burden' of 710 rosaceans and 554 doctors which is used as data for the report with the stated goal of achieving total clearance (IGA 0). The report acknowledges, "Although we can’t yet promise ‘clear’ to all people, current treatments are now getting more people to ‘clear’, with combined therapy or even with monotherapy. By aiming for ‘clear’ (IGA 0) we can help free more people from their rosacea burden." One statement that explains rosacea best in the report is, "Ultimately, rosacea is a subjective and entirely individual experience." While we try to categorize rosacea into phenotypes and treatment protocols, there is no one treatment that works for everyone.
  25. Bloomberg reports, "Nestle said Thursday it would consider new owners for its dermatological business, a unit with $2.8 billion in annual revenue that Chief Executive Officer Mark Schneider said may no longer fit with the company’s overall strategy of focusing on products such as coffee, water and pet food." [1] Nestle owns Galderma, which is part of its 'dermatological business' or 'Nestlé Skin Health.' As David Pascoe puts it, "Lets hope that a pharma with deep pockets emerges, one that sees value in the assets of Galderma and further sees a future in developing new treatments that help rosacea sufferers." [2] Rosacea sufferers usually are very much aware of Galderma's Soolantra, Oracea, Mirvaso and Metrogel (Metrocream). We shall wait and see what happens. End Notes [1] Nestle's Step Away From Skin Health Reignites L'Oreal Sale Talk By Thomas Mulier and Corinne Gretler, Bloomberg [2] Galderma for sale – why we need the right buyer, by David Pascoe, Rosacea Support Group
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