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  • Misdiagnosed Rosacea

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    Articles, References and Anecdotal Reports

    There are articles on rosacea that mention misdiagnosed rosacea. While this isn't a massive problem, nevertheless, here is a list of different sources that mention the subject, including (if you scroll below) many anecdotal reports of misdiagnosis. Misdiagnosis is what falls under the medical umbrella called 'medical error.' You should be aware that rosacea may be a catch all diagnosis for a number of skin conditions that present with erythema and/or pimples. The list of skin conditions that need to be differentiated from rosacea is massive. It is no wonder that misdiagnosis occasionally happens. 

    Add Your Report
    If you want to add your experience with misdiagnosis please post your anecdotal report in this thread, since we are not adding to this page any more anecdotal reports. If you scroll below we have over 100 anecdotal reports of misdiagnosis. More are being added as we find more or if you add your report to this thread

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    Articles and References from Reputable Authorities 

    "To the untrained eye, unusual skin presentations can cause confusion and alarm. They can also go misdiagnosed, often not getting the attention they require. This is because many skin conditions can seem similar in appearance to one another, says Shari Marchbein, board-certified dermatologist and clinical assistant professor of dermatology at New York University School of Medicine....Another common misdiagnosis is rosacea disguised as acne, says Estee Williams, a board-certified medical, cosmetic and surgical dermatologist and clinical professor in dermatology at Mount Sinai Medical Center in New York City." 
    4 Skin Conditions That Are Often Misdiagnosed, According to Dermatologists, BY ERIN NICOLE CELLETTI, Allure

    "Rosacea SKINsights sponsored by Galderma Laboratories [reveals] the lengths that women with rosacea would go to if they could get rid of their rosacea forever, and highlight the low awareness and complicated diagnosis path for this common condition. On average, women with rosacea waited at least seven months before receiving a correct diagnosis, and only half of respondents had ever heard of the condition upon the time of diagnosis. This reveals the high level of misunderstanding and confusion that surrounds rosacea..." Medical News Toda

    "Currently, rosacea is only diagnosed by clinical symptoms and can be confused with other dermatological diseases such as acne."
    New Treatment or Diagnosis for Rosacea with Existing Approved Drugs
    Tech ID: 19149 / UC Case 2007-047-0
    University of California, San Diego
    Technology Transfer Office

    "Despite its apparent high incidence, the nosology of rosacea is not well established, and the term “rosacea” has been applied to patients and research subjects with a diverse set of clinical findings that may or may not be an integral part of this disorder. In addition to the diversity of clinical manifestations, the etiology and pathogenesis of rosacea are unknown, and there are no histologic or serologic markers."
    Standard classification of rosacea: Report of the National Rosacea Society Expert Committee on the Classification and Staging of Rosacea

    ''Some physicians may not be aware of or recognize rosacea and may treat patients with rosacea inappropriately as if they had adult acne.''
    Dr. Jonathan Wilkin NRS Medical Advisory Board

    "Rosacea is a common dermatologic disorder. It is frequently overlooked or misdiagnosed, particularly when mild in nature."
    Rosacea: A Review of a Common Disorder by Carolyn Knox, IJAPA

    "Patients with rosacea frequently present with coexisting skin conditions, such as seborrheic dermatitis, acne, perioral dermatitis, and melasma, which may complicate diagnosis and treatment."
    Heather Roebuck, Nurse Pract. 2011 Jan 11.

    "A committee member, Dr. Mark Dahl, a dermatologist at the Mayo Clinic in Scottsdale, Ariz., said, ''This is a syndrome with lots of different elements that is easy to diagnose when all the elements are present,'' but not as easy when only one or two of the characteristics appear."
    PERSONAL HEALTH; Sometimes Rosy Cheeks Are Just Rosy Cheeks
    By JANE E. BRODY, New York Times, March 16, 2004

    "Rosacea is a complex and often misdiagnosed condition." The Rosacea Forum Moderated by Drs. Bernstein and Geronemus

    "Whereas the classical subtypes of rosacea can be recognized quite well, the variants of rosacea may be overlooked or misdiagnosed." rosacea.dermis.net

    "Rosacea is often misdiagnosed as acne or discoid or systemic lupus erythematosus (SLE)." Christiane Northup, M.D.

    "Frequently misdiagnosed as adult acne, this chronic, progressive skin disorder affects millions." Recognizing and Managing Rosacea by Thalia Swinler, JSTOR

    "The last subtype, ocular rosacea, is common but often misdiagnosed." uspharmacist.com

    "The signs and symptoms of ocular rosacea in children may be frequently underdiagnosed or misdiagnosed..." NRS Rosacea Review, Summer 2008

    “It’s a condition that is often misdiagnosed and overdiagnosed. Sometimes a rosy cheek is just a rosy cheek.” Herbert Goodheart, M.D., a dermatologist in Poughkeepsie, N.Y., and author of “Acne for Dummies,” as quoted in the New York Times article

    "Dr. Jay points to the inherent dangers of misdiagnosis and inability to handle complications because of a limited understanding of cutaneous physiology."
    IPL: Wave of the future in rosacea therapy by John Nemec, Aug 1, 2006

    "...unusual manifestations of rosacea may be overlooked or misdiagnosed...."
    Rosacea: An Update
    Stanislaw A. Buechner
    Dermatology 2005;210:100-108 (DOI: 10.1159/000082564)

    "Rosacea is a skin condition as misunderstood as sensitive skin, and as frequently misdiagnosed." Dermilogica

    "Rosacea is a very common, but often misunderstood and misdiagnosed skin condition." skinlaboratory.com

    "Rosacea is a long lasting, non-scarring skin condition of the face that is often misdiagnosed as adult acne." Paul M. Friedman, MD

    "Rosacea is quite often misdiagnosed as any number of other skin disorders including acne." methodsofhealing.com

    "Often misdiagnosed as adult acne, allergy or eczema, Rosacea, if left untreated, tends to worsen over time...." Dana Anderson Skin Care

    "This present patient clearly had facial changes typical of acne rosacea, with erythema and telangiectasias of the cheeks, forehead, and nose. He had all the typical lid changes as well, including collarattes that are pathognomonic of staphylococcal blepharitis. Unfortunately, he had been misdiagnosed for several years…" Clinical Pearls by Janice A. Gault, p. 206

    "Due to the fact that lupus can cause a red rash across the nose and face, often in a butterfly pattern it can be confused with or misdiagnosed as rosacea. .." www.rosacea-treatment.net/

    "Dr. Callender also noted that rosacea is often misdiagnosed in patients of color, as clinicians may mistake the signs and symptoms of the condition for lupus – a systemic, autoimmune condition that commonly occurs as a “butterfly rash” involving the face."
    Treating acne and rosacea in people with skin of color - ihealthbulletin.com

    "...it's often overlooked in dark-skinned patients or misdiagnosed as lupus, which is marked by a red, butterfly-shaped rash in the center of the face,..." Shape May 2009

    "...the diagnosis of demodicosis is frequently masked by other skin diseases such as papulopustular or erythematotelangiectatic rosacea, seborrhoeic dermatitis, perioral dermatitis and contact dermatitis." Br J Dermatol. 2010 Feb 25.

    A Case of Precursor B-cell Lymphoblastic Lymphoma Misdiagnosed as Rosacea.
    Han EC, Kim DY, Chung JY, Chung HJ, Chung KY.
    Korean J Dermatol. 2008 Feb;46(2):264-267

    "It is when the first diagnosis and treatment don't work that dermatologists look deeper and often discover something called demodex." Microscopic menace may be cause of skin trouble, Jennifer Van Vrancken, Reporte, FOX 8 News: WVUE Live Stream

    "Busy doctors who cannot take a detailed history will frequently miss the diagnosis, complicated further by the fact that rosacea is a great mimic of other unrelated disorders that present with a “red face”. I have often seen classical cases of rosacea mistakenly diagnosed as acne vulgaris, lupus erythematosus, seborrheic dermatitis, contact dermatitis, and other inflammatory diseases." Albert Kligman, A Personal Critique on the State of Knowledge of Rosacea

    "Ocular rosacea is frequently misdiagnosed, particularly in the pediatric population." Eur J Ophthalmol. 2012 Jan 3:0. doi: 10.5301/ejo.5000103.

    A report, About some red faces, stated: "Diagnosis is based on different data: date and mode of appearance, characteristics of the erythema, functional signs, and associated systemic manifestations. A case of red face can have an infectious origin, caused by vascular, congenital, or acquired lesions, or be caused by photodermatosis, or be the main location of inflammatory dermatosis or collagenosis, but depending on the clinical context, many other diagnoses can be suggested."

    "Butterfly rash is a red flat facial rash involving the malar region bilaterally and the bridge of the nose. The presence of a butterfly rash is generally a sign of lupus erythematosus (LE), but it can also include a plethora of conditions. The case presented here is of a female with butterfly rash along with typical bright red discoloration of gingiva. The clinical, histopathological and biochemical investigations suggested the presence of rosacea."
    Contemp Clin Dent. 2012 Jul;3(3):356-8. doi: 10.4103/0976-237X.103637.
    Butterfly rash with periodontitis: A diagnostic dilemma.
    Aggarwal M, Mittal M, Dwivedi S, Vashisth P, Jaiswal D.

    "A 28-year-old female patient presented with extensive facial and ocular eruptions. She had a history of treatment with oral prednisolone due to the clinical diagnosis of lupus erythematosus (LE)....With the clinical diagnosis of severe oculofacial rosacea, she was successfully treated with oral doxycycline, steroid eye drops, and ocular lubricants. Histopathological features of skin biopsy were consistent with rosacea in the context of infection with Demodexfolliculorum.... Rosacea can be extremely severe and disfiguring, and it can be misdiagnosed as the pathognomonic butterfly rash of LE."
    J Ophthalmic Vis Res. 2017 Oct-Dec; 12(4): 429–433.doi:  10.4103/jovr.jovr_46_16
    PMCID: PMC5644412
    Severe Rosacea: A Case Report
    Ebrahim Shirzadeh, MD, Abbas Bagheri, MD, Mojtaba Fattahi Abdizadeh, PhD, and Mozhgan Rezaei Kanavi, MD

    Q: I was diagnosed with rosacea, but my skin isn’t responding to the rosacea treatments. In fact, it’s getting worse. Is it possible that I have both rosacea and acne?

    A: In a word, yes. For some patients, it is possible to have both rosacea and acne., Sue Chung , Patient Expert, Rosacea Misdiagnoses, Skin Health, Health Central

    "Many people with skin of color who have rosacea may experience delayed diagnosis leading to inappropriate or inadequate treatment, greater morbidity, and uncontrolled, progressive disease with disfiguring manifestations, including phymatous rosacea."
    J Am Acad Dermatol. 2018 Sep 18;:
    Global Epidemiology and Clinical Spectrum of Rosacea, Highlighting Skin of Color: Review and Clinical Practice Experience.
    Alexis AF, Callender VD, Baldwin HE, Desai SR, Rendon MI, Ta ylor SC

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    Anecdotal Reports of Misdiagnosis

    The following is a partial list of anecdotal reports either of misdiagnosing rosacea for another skin disease or vice versa:

    1. Bob reports his rosacea was misdiagnosed for discoid lupus

    2. Elizabeth's initial diagnosis of rosacea turned out to be KP

    3. Andrea says her initial diagnosis of rosacea may have turned out to be pellegra

    4. Jason was misdiagnosed numerous times and was unfortunately given steroids which he believes aggravated the condition.

    5. Kari was initially diagnosed with rosacea and later found out it was eczema.

    6. maxigee2002 said after six months of being treated for rosacea a doctor discovered she was misdiagnosed and actually had Pityrosporum Folliculitis

    7. gdybe was misdiagnosed with Crohn's disease and after six months of steroids developed rosacea.

    8. Ladonna was misdiagnosed with rosacea and it turned out to be Graves Disease. 

    9. Susan reports that she developed "a rash above my eye (below the eyebrow - a little on the lid itself). First he said it was "orbital dermatitis" and gave me topical cortisone and anti-biotics. Not sure it helped much, it seemed to go away on its own schedule, although the steroid may have lessened the itchiness. I went back and he prescribed Metrogel and more cortisone cream. He told me it was a form of rosacea."

    10. Tom says that 6 years before he was diagnosed with rosacea and treated and now says "This doctor does not think I have rosacea, instead 
    he thinks I have erythema." Tom says he thinks he might have KP. 

    11. DC says his physician misdiagnosed his dermatitis as rosacea. 

    12. NorthNova says he was misdiagnosed by dermatologists before he found out he had rosacea. 

    13. flareface reports that a dermatologist diagnosed her condition as "physiological flushing" and later she says a PA "misdiagnosed pretty much everything, gave me 3 different steroidal creams and sent me on my way." Later another derm diagnosed "contact allergy" on her eyes and prescribed a mild dose of cortisone cream for a couple days and it all cleared up. 

    14. redKen (see post #2) says his dermatologist misdiagnosed his rosacea for dermatitis. 

    15. nk104 says two dermatologists diagnosed rosacea. A third physician said it was not rosacea but neurodermitis. 

    16. Jonesy says his GP said he didn't have rosacea and later went to another physician who diagnosed urticaria. 

    17. RedFacedRedHead says her rosacea turned out to be KP.

    18. cliopatra25 says that for ten years she was misdiagnosed with acne when all the time she had rosacea. 

    19. vicky says "both my sisters was misdiagnosised collectively 10 times... and they have lupus...similar to my brother, he even had 2 positive ANA tests and thedoctor refused to treat him for lupus...... 

    20. Deb says, "I mentioned in another post that for years I was given things that were making the Rosacea worse, like retin-A and cortisone cream. I had mild rosacea then, so was misdiagnosed. For a while they thought it was Lupus since I also maintain a low-positive ANA. Their and my mistakes only made it worse, especially in the past few years." 

    21. Lisa M says, "I suffered from cystitis for years... and had to go on daily antibiotics for it for about 2 years. I also did saw a homeopath at
    the time and changed my lifestyle to no alcohol at all. I didn't know
    it at the time but I had rosacea (sadly totally misdiagnosed by
    several derms). 

    22. Mike says, "I also developed ocular rosacea a couple of
    years ago, after having facial rosacea for quite a few years. My first
    opthamologist misdiagnosed it, and treated me for months with steroids (mainly Tobradex) which ended up raising my IOP to a dangerous level. 

    23. Aurelia reports that "A teenage girl was given an "almost certain" diagnosis of ocular rosacea....The symptoms suffered by this girl did NOT match those of ocular rosacea and specialists later came up with a diagnosis of autoimmune Urticarial Vasculitis.

    24. Kerry reports that "I have found out today that I was yet again misdiagnosed and I don't have rosacea I have Lupus." 

    25. Sarah Smart says, "I am 12 weeks pregnant and my rosecea fulmins was horribly misdiagnosed by my derm (as shingles if you can imagine) and I spent 5 days in the hospital before they figured it out."Report.

    26. Kerry says, "I was misdiagnosed for 4 yrs by my gp as I have pretty severepsorisis on 60% of my body and scalp. They gave me a really strong steroid which has made my skin worse on my face.although it kept it under control. I found out 3 weeks ago i have rossacea and they
    stopped my steroids so my face has had a major eruption." 

    27. Ellen says, "my rosacea related blepharitis was misdiagnosed as seb derm." 

    28. sand7676 says, "I was misdiagnosed with acne I believe because of my skin tone. 

    29. Francois says that three derms diagnosed he had 'vascular dilation' and the last one said he had " 'Sebore' in Turkish. I looked at internet and I think it means 'Seborrhe'." 

    30. Kevin Forest says, "I've recently been diagnosed with rosacea after being misdiagnosed for ~2.5 years (errrrrr! derm aggerssion)."

    31. Joe says, "I've been misdiagnosed by numerous dermatologists who
    were in disbelieft that I would have rosacea at such a young age and
    assumed it was merely acne."

    32. Suzi LeBaron says, "I was misdiagnosed because it looked like
    rosacea -- including occular symptoms."

    33. Mike Lester says, "they called it seborrheic dermatitis, maybe rosacea. to be honest no one knew. many blood tests for lupus or something....Ive been going to doctors and doctors for my facial redness that ive had for over a year now. Well, they seem to have diagnosed me with ROSACEA!!!....I was checked for everything, lupus's, mastocytosis, carcinoids, tumors on the kidneys, brain tumors, and much, much more, some things some doctors have never even heard of. but it turns out i was misdiagnosed by the Mayo Clinic from the start, so we didnt need to go through months and months of stress, depression(which by the way i go to a psychologist now and am on PROZAC too).

    34. Stuart Clark says, "I too waited months for an appointment (on two separate occasions) and she completely misdiagnosed me." 

    35. Carol Voigt says, "I, too, was "misdiagnosed" for many years."

    36. Jeff says, "I got misdiagnosed by my previous dermatologist...So he gave me a steroid to apply twice a day, which of course, did not help. And by the time I had diagnosable rosacea..." 

    37. Eddie O'Neill says, "She said that I did NOT have bacterial conjunctivitis and had been misdiagnosed..."

    38. Chantal says, "in my early 20's (around 22-23), and was misdiagnosed for years (about 5) until the correct diagnosis of rosacea was made."

    39. Heather says, "My facial rosacea was misdiagnosed for MANY years (mainly an acne component with some redness)..."

    40. Jay Valof says, "2yrs ago i had septoplasty (deviated septum) nose surgery. soon after developed symptoms, was misdiagnosed as having asthma/allergy. 2 months ago derm. said in had rosacea..."

    41. jesseleigh says, " I just found out about a week ago I have rosacea, have been misdiagnosed with atopic dermatitis for ten years." 

    42. yoli says, "I was misdiagnosed for 2 years they thought I had dermatitis but in reality i don't itch but burn.... it took me 6 dermatologist in order to get diagnosed with Rosacea." 

    43. beecham says, "I was diagnosed in December 2007 with pustular rosacea by my new doctor, I was on oxytetracycline for about a year before with my previous doctor who had misdiagnosed me with perioral 
    dermatitis.... "

    44. LoriB says, "When I saw my general doctor while waiting for an appointment with a derm he misdiagnosed me as having acne vulgaris. He told me I don't have rosacea because my cheeks aren't red." 

    45. jodieginger says, "I was repeatedly misdiagnosed as having dermatitis and none of the derms seemed to care that I simultaneously had blepharitis simultaneously. "

    46. mineren says, "I have adult acne in addition to rosacea and
    was misdiagnosed a couple of times. "

    47. mythjedi says, "She stated that I had "contact dermatitis" and gave me doxycycline....but it wasn't long before transient, big, patchy red blotches began to form on my face and chest....I discovered that I was allergic to these pills, and I stopped taking them.... I have been
    off of the pills for six months...I went to a dermatologist and was diagnosed with rosacea..."

    48. Yvonne says, "My SD was misdiagnosed as rosacea." 

    49. Cassie Henderson says, "I was misdiagnosed by a blind derm and used hydrocotizone for three months. My rosacea went from a splotty red blotch on one cheek to an all over the face red hue very bumpy dry and ruddy looking. I then went to a derm who wasn't legally blind and started using metrogel and minocycline which helped for awhile."

    50. Keith on 07.15.09 at 12:43 pm says, "...I went to a highly accomplished and respected doctor in my area who diagnosed it as Rosacea so I guess thats what it is. Other Derms have said sundamage, Folliculitis, so it is still uncertain to me..." Scroll down to Comment # 91

    51. Lori said her acne was diagnosed as rosacea which later turned out to be also seborrhoeic dermatitis after she had taken Oracea for over a month. She was switched to Doxycycline at a higher dose and Finacea. See Comments #68, #84, #89, #93, #107, #114, #117, #123.

    52. raly says, ..."I've been "diagnosed" at different times as it being rosacea, folliculitis, sebderm or possibly just acne from both GPs and a dermatologist..." Scroll down to Post #9

    53. dan pacifik says, ".... After a second trip to the doctors, my doctor seemed to think it was rosacea so she prescribed me metro cream 0.75%....…I think! I pretty much used this for about 8 months....I went back to my doctor about this and she said it looked more like acne on my forehead....I am however skeptical over my doctors and derms diagnosis..." 

    54. kfoltz9 says, "I am a 25 year old female with what appears to be perioral dermatisis around my mouth. My family history only consists of Psoryasis and I have not had a personal experience with this. I am currently on Effexor XR. I use Aveda sensitive skin facial cleanser which does not contain any Petrolatum. I have not introduced any new cosmetic products into my regimen. The dermatologist I went to yesterday about this month-old rash (I have had one previous occurence, only less intense) did not even inspect the rash, asked me if I blushed easily or often (I do not, and told him that) and diagnosed Rosacea in about 3 seconds. 

    55. siliconmessiah says, "...I first went to the doctor on a "drop-in"-visit. One of them (a really shitty doctor actually) prescribed cortisone cream for my problems - I took it for a couple of weeks with no signs of getting better. I returned to a new doctor, a really good one I might add...she diagnosed me in one minute under the light of a lamp..." Scroll down to post #2

    56. brighteyes says, "It took me approximately 3 years (and 6 derms) to get an official diagnosis...." Scroll down to post #3

    57. Mistica says, "...So in my case, rosacea wasn't recognised immediately and even 10 and a half years on from the orginal diagnosis, the 'diagnosis' is continuing in some ways. It looks like rosacea ( no missing that!!) and it behaves like rosacea, ... but is it just Rosacea?..." Scroll down to post #8

    58. IJDVL reports, "Subsequently, the initial diagnosis of allergic conjunctivitis was revised by the ophthalmologists to ocular rosacea." *

    59. A 32-year-old woman had developed moderate swelling, erythema and papules of the central part of her face for 8 weeks. She started to apply various topical cosmetic products sold for acne that did not help. As one of her hobbies was outdoor biking she noticed that sun exposure aggravated her skin condition, also resulting in burning and stinging sensations. She consulted her general practitioner who prescribed prednicarbat cream for topical application on the affected regions. Whereas she observed a slight improvement of the skin condition during the first week, she later on suddenly developed a severe worsening with erythema, papules and many pustules. She presented to a dermatologist and was diagnosed with "steroid rosacea". She went off the steroid, started topical treatment with metronidazole 1% and oral treatment with metronidazole 500 mg twice daily for 2 weeks. After an initial worsening during the first 3 days the skin condition rapidly improved. She continued metronidazole 500 mg once daily for another 2 weeks and then stopped. The topical treatment was continued twice daily for altogether 4 weeks and then reduced to once daily for another 4 weeks. Besides, she applied sun screen whenever she was outside. She continued intermittent topical use of metronidazole 1%. She remained free of symptoms except of an intermittent slight centrofacial erythema. See case report #1 

    60. A 39-year-old woman was referred to a dermatology department because of worsening of her known rosacea. She had been suffering from rosacea for 3 years. After initial, short-term and intermittent oral therapy with tetracycline for periods of up to 3 weeks she had continued topical treatment with tretinoin without any problems for the last months. Suddenly, she developed an erythema of the face accompanied by strong burning that increased in the evening, decreased over night and was moderate at day time. She discontinued topical tretinoin therapy because she felt that the symptoms were caused by it. She presented to a dermatologist with a sharp erythema of the whole face with only solitary papules and pustules. Due to the patient's history and the clinical finding contact allergy was suspected. Patch testing revealed a sensitisation to cocamidopropyl betaine, a surfactant that is frequently added to shampoos and skin cleansing products. This substance could be identified in her skin cleanser. When she discontinued this product, the symptoms disappeared and the patient could continue her topical treatment.
    We recommend to precisely ask patients about all the topical drugs and cosmetics they use including skin cleansing products. Contact allergy can also occur in rosacea patients and may mislead patients and physicians. See Case Report #3

    61. A 56-year-old diabetic man presented erythematous papules and pustules on the neck and face who had developed since 3 months. He had been treated with topical corticosteroids for the same time period that resulted in progressive exacerbation. He additionally showed patches of hair loss in the beard area, erythema and scaling of the ears. Among various differential diagnoses the clinical picture reminded of stage II rosacea. Microscopial examination and culturing revealed Microsporum canis. He was diagnosed tinea incognito, a term that has been used to describe dermatophyte infections modified by corticosteroid treatment.
    This case report demonstrates that there is a number of other skin diseases that can mimic rosacea. (see Case Report #7)
    Gorani A, Schiera A, Oriani A: Case Report. Rosacea-like Tinea incognito. Mycoses 2002; 45: 135-137. 

    62. A Case of Precursor B-cell Lymphoblastic Lymphoma Misdiagnosed as Rosacea
    Han EC, Kim DY, Chung JY, Chung HJ, Chung KY.
    Korean J Dermatol. 2008 Feb;46(2):264-267

    63. Pete says, "...Had previously been misdiagnosed by my G.P. Had been treated with steroid creams for eczema...."

    64. shakti says, "...I had a horrible rash on my face which the Dr. (dermatologist) even took pictures of, but he said it was rosacea....Then a neurologist said I could have some sort of mild m.S..... I've recently had a "rosacea flare" swelling and redness around my eyes and upper cheeks, the tiredness has returned and so has pain in my bladder and gi tract...."

    65. belinda says, "After being misdiagnosed for 7 years, I had almost given up hope." published April 8, 2008

    66. mmee says, "...just wanted to say after many years of suffering with depression and social anxity because of a red face and not being able to get any information out of 3 dermatologists and about 5 GPs (they just said it was 'normal') . I've found out from a link on this website it must be Keratosis pilaris rubra faceii..." 

    67. Gem says, "A couple of months ago I developed a rash on my forehead and weas gicven a steroid cream for it that seemed to keep it under controlfor a while, then around 3 weeks ago it spread and looked angry, I went to the doctor who said it was acne the cream I was given just aggravated it, so I went back and was given another cream by a different doctor who still thought it was acne... this again aggravated it, so I started looking on the net for other ideas or medications that could help. I tried coconut oil and aloe vera topical and ingested, another trip to the GP I was given Tetracycline oral antibiotic but it was something like a 3 month course, ....I went to my doctor again today as my self treatment wasn't doing any good and I was told it looks like rosacea I've been given metronidazole gel and I've started the Tetracycline oral antibiotics again...." 

    68. ssaeed says, "...He diagnosed me initially with Seb Derm and prescribed Desonide cream for 3 weeks. I noticed my skin got a lot better and softer during this treatment although towards the end of the treatment I started getting small pus filled acne bumps on my nose and cheek, about the size of a pore. When I saw the doc after the 3 week Desonide treatment he told me I may have symptoms of Rosacea and started me off on a treatment of Metrogel once a day and Oracea once a day in the morning." 

    69. Ladonna says, "...my husband took me to the dermatologist and she said it was Rosacea and couldnt be anything but....So he took me to many doctors, and finally a wonderful doctor took a shot in the dark blood test and discovered my problem. Later more involved tests and scans confirmed it. I was Hyperthyroid...specifically Graves Disease..."

    70. DylanG says, "... I finally got an appointment with a dermatologist for my rosacea. After waiting about half a year, I go to the appointment. The dermatologist walks in, doesn't even look at my face and says "There's nothing I can do about redness. Some people just have red skin". Then, to top it off, he gave me cream for acne - something which I could care less about - that has the side effect of making your face red. I was out of his office in practically two minutes with about twenty tiny tubes of acne medication I had no need for. ..." Scroll to Post #22

    71. Donna says, "I got results back from labs and xray..i do NOT have sarcoidosis…but still not sure what i have …i have granulomas popping out on parts of my body and my face is still not clear. I am going to a conference of doctors on the 16th to get their opinions. I was originally diagnosed with Granulomateous rosacea so lets see what opinions i get." Post #146

    72. liangjuany says, "I saw another doctor today and was told what I had was not rosacea but pityriasis rosea instead." 

    73. huiness says, "another derms who told me I had acne, or folliculitis etc. When I finally decided to go back to Derm #2, he then diagnosed me with rosacea.....went to Derm #14809348. He agreed with the rosacea diagnosis but said that this was probably steroid induced...."

    74. mrsmoof says, "1st dermatologist thought I had dermititis.....Well, I went to a 2nd dermatologist and told her my story, symptoms.....within minutes she said it was Rosacea...." Scroll to Post #43 

    75. "My wife was diagosed by a local Dermatologist as having Rocacea. He only did a visual inspection without any actual skin testing. He was sure it was Rocacea and prescribed an expensive cream which she would have to use for who knows how many years. Luckily she had a severe reaction to the cream, and discontinued it. She visitited her home country of Russia and was treated by a specialist. He told her she didn’t have Rocacea but had Demodex. She had one treatment by the doctor and her face is still clear after 6 months. Always get a second opinion." J Noble on 01.12.10 at 7:11 am Post #215 

    76. spuggylegs says, "I think it took about 10 mins for a NHS dermatologist to tell me that I didnt have rosacea. She looked at my skin said there was no visible erythema or papules and pustules to suggest rosacea, and that I needed to stop "reading stuff on the internet". I had to actually ask for a blood test to rule out lupus etc!!!!! I asked my GP if he could send me for a second opinion but he refused. The problem is that there is a lot of inequality in the NHS...and as someone who lives in a deprived area, healthcare is usually not as good as those who live in more affluent areas. (but thats another story). Well I still carried on "reading stuff on the internet" : ) and decided the only way forward was to go private..even though i couldnt really afford it. So travelled from the north east to London, and got so stressed, as we got lost a few times, and London is not the friendliest of places. By the time I had got to see the derm I was having a major flush....so after reading my medical notes, asking about family members who may have rosacea,, symptons, and looking at my skin, he diagnosed rosacea. From what i can remember the consultation lasted about 30 mins." Scroll to Post #50

    77. Rachelle C says, "My doctor diagnosed me with rosacea, delusional paristosis. The medications for these did no good. Then another dermatolgist with an allergist diagnosed me with demodex (skin mite) allergy." Scroll to Post no. 77 on 05.04.10 at 1:00 AM

    78. Girrlock Holmes says, "…I was finally diagnosed hypothyroid, insulin resistant and PCOS, and my doctor also thinks my symptoms fit with fibromyalgia…I saw a dermatologist who said it was not Rosacea but offered no info on what it could be. Then I saw an allergist and he said the derm had no basis for saying it was not Rosacea; it looked like it to him. So you see I have no clear diagnosis. I am waiting for a different derm to see me but it will not be for another 2 months…"

    79. "Terri Flynn, a 63-year-old part-time receptionist from Texas....Two different evaluators told her she had "dry eye" and prescribed artificial tears and various eye medications, while one also suggested she have her bottom eyelids lifted to help retain the moisture in her eyes....She made an appointment with a dermatologist, who "took one look at me and said, 'Yes, it's rosacea." NRS Rosacea Review Spring 2010

    80. GNR reports, "...I was told I had Perioral dermatitis because there was an outbreak near my nose....Began to notice a swelling under my right eye and a red path beneath extending up the temple. It became hot and sensitive and flares when I workout with weights. Told "hmm don't know what that is, it's not rosacea (my fear was that it was) but try rozex cream to see if it goes." It didn't. Didn't change. Had a second opinion. Same as the first. "Don't know, looks like it might be fungul. Leave it until you see a dermatologist." Began to a sore eye, a few pains and watering. Went back to the second opinion to ge this checked was given a scrip for kenocomb ointment for fungus....out of desparation I went to another gp explained the whole story again. He checked the skin, told me it wasn't rosacea that it looked like a fungus infection try Nizoral 2%. Hmmm. Later that day I had an appointment with a new dermatologist who told me that I actually had seborrhec dermatitis...this sounded right as all the systems relate, rash on chest, dry skin in eyebrows, dandruff...funny I'd never connected these things and either had anyone else.
    He then checked the rash thing on the right side of my face and temple and told me it was rosacea. I asked about the pain in the eye, watery, and he said not connected. Gave me a print of what to expect with rosacea and out the door I went..."

    81. comicraven reports, "I had been misdiagnosed for a while - everything from shingles to testing for lupus - and was finally properly diagnosed about 6 months ago..."

    82. koki says, "OK according to dermatologist # 4 , again I dont have rosacea, I explained my symptoms and he said it sounds more like an allergic reaction and when he examined my face he said it was more like eczema/seborrheic dermatitis and gave me some diflucan. ....I am glad most derms say is not rosacea..."

    83. stb09 says, "In May 2004, I developed a pimple on my nose that left a red mark on it for, what must've been a solid YEAR after it cleared up. I was thorougly convinced this was a scar, and went to several dermatologists to find proper treatment. Such begins my ongoing battle (and subsequent HATRED) for all dermatologists.

    The first one I saw told me that it was a mole....
    I sought a second opinion. This one told me it was a scar, and could only be removed by a plasic surgeon. He took my $100, and gave me the number of a plastic surgeon.

    The plastic surgeon (who was once a dermatologist) was convinced it was a pimple still, and simply lanced it and dug around in it, ultimately making it worse....

    The fourth and final dermatologist perscribed me a prescription in January of 2005 for my back acne/oily skin. He agreed with ME that whatever was on my nose was inflammed and most likely a sebacous cyst. He injected it with cortisone, and that made a tremendous difference, and today there's not a mark to be found. This is the same dermatologist that dismissed my concerns of facial redness and never spoke a word about Rosacea in spite of my ruddy complexion that I was, at the time, unaware of....I was at a new branch of my college and went to the local dermatologist to seek treatment. He told me it was probably a scar and gave me the number of a laser surgeon FOUR hours away that "might" be able to help me.

    THIS is the first time a doctor has mentioned the word "Rosacea" to me. He explained that I had a ruddy complexion, and thus, the red spot on my nose was more noticable. He went on to state that people with my complexion "could be candidates for Roscea later in life." and encouraged me to stay out of the sun......I finally decided to see a dermatologist to rule Rosacea in or out so I could get on with my life one way or the other. I went back to the local dermatologist, who had told me that someone with my complexion might be a candidate for Rosacea later in life, and was told absolutely nothing new.

    He once again told me that, maybe I'd have it one day, and maybe not. I asked him if I should try avoiding "triggers" and he said that I shouldn't bother. Because it probably wouldn't help. I asked if there was any treatment, because I've since learned Rosacea is best treated early on. He said that any creams he could give me would most likely not do anything at all for me, and would be a waste of my money. The entire visit was quite ambiguous.

    I asked him what "Pre-rosacea" was, and what the difference was between that, and a normal ruddy complexion. He told me that, in his opinion, there wasn't one. As he considers anyone with a ruddy complexion at risk for developing Rosacea, and THAT he considers to be "pre-Rosacea."

    Before I left, I asked him for a definitive answer one way or the other, and he told me NO, I do not have Rosacea.....To the point of the original thread, I'd like to determine what it is I have. The doctor seems sure it's not Rosacea, but as evidenced by my ongoing battle with Dermatologists prior, I believe if I went to 10 Dermatologists I would receive 10 different opinions. Rosacea, ruddy complexion, acne, allergic rash, facial blushing, too much Niacin, high blood pressure, lupus...

    these people don't know anything, and with no insurance I'm not going to waste $100 a visit to find out precisely nothing.

    84. Ontarian says, "I was diagnosed with seborrheic dermatitis on my face about 5 years ago. The diagnosis was made by a dermatologist. Soon after, the dermatitis completely disappeared for a loooong time. Then, I suddenly got a red patch on my right cheek five years later, more precisely in February of 2006. It has slowly spread to my entire right cheek. It got worse in the summer. This whole time I thought I had seb. dermatitis. My family dr. said my face was dermatitic and prescribed hydrocortisone. It didn’t help. In August of 2006 I went to my dermatologist. This time, he said I had rosacea. I was shocked. I was not flushing like crazy (except maybe when I played soccer in +35 C degrees outside). My symptoms started as a small red patch on my right cheek, this could not be rosacea. I went to see another dermatologist (an old dude who thinks rosacea is a proper diagnosis only when your face is swollen like a balloon and when you are covered with pustules).
    So, now I have two doctors thinking I don’t have rosacea, and one doctor thinking I do." Posted: Tue Oct 17, 2006 1:34 pm (scroll down to find the post)

    85. Jen says, "Since I have stopped the med I was diagnosed with Perioral Dermititis and now as of yesteday the derm tells me I have acne.....The derm said I have almost all the face disorders (rosacea, acne, perioral dermititis, seb derm)....

    86. jhelli1 says, "I've been to four different doctors in the past and have gotten four different diagnosis. The last one was rosacea. Yesterday, I went to a fifth doctor and was told that I have..........eczema!

    87. fedup says, "....I went to this dermatologist maybe 2-3 times a year over about a 4 year period, every appointment he seemed to have absolutely no idea what was going on, or what he had prescribed/said the last time, he took a look at my scalp, says "its folliculitus" (the way he said it, every time, was as if it was a breakthrough and he figured out some giant mystery, even though he said the same thing last time....and sent me home with a prescription for Ceftin 500mg 2x a day for 2 weeks (insanely strong antibiotic, I know now..).....Made an appointment with a new dermatologist (roughly 2 years ago), after explaining the antibiotic fiasco, he told me my old doctor probably shouldnt be practicing medicine. He took about 10 seconds to diagnose me, looked at my scalp, and simply said "you have inflammatory rosacea."

    88. mutantfrog says, "...I always grumble to myself about rosacea...but if it turns out that I never had rosacea but instead have had an autoimmune disorder...well it's scary I'd rather take rosacea. I swear to god I'll never complain about 'rosacea' again..." Post #10 22nd July 2010, 07:40 PM

    89. quixotic_pessimist says, "Anyway, I had been seeing a dermatologist during this time period for acne that I have had for about 3 years, and he never mentioned anything about the red complexion of my nose. One time I voiced my concerns, and he pretty much dismissed them, saying that he didn't think my nose looked red. During my last meeting with him, I was a bit more belligerent (in that I brought up the grievances that I have with my red nose a few times). He then nonchalantly throws out that it is possible that I have Rosacea. How is it that I had been visiting this doctor for 3 years with the same red nose, but it is not until now that he suggests that I might have Rosacea? I don't get it."

    90. CHI_GUY says, "...First doc said, sebborhea/eczema. He gave me many different things, to list a few....Second doc, new one, diagnosed perioral derm. She gave me tetracycline. 500mg x2/day for the first month. She exclaimed that the previous doctor was treating the wrong thing, because I brought all my old meds in to show her...."

    91. Natasha says, "I have just been diagnosed with Rosacea....a week ago the doctor wrongly diagnosed excema..."

    92. hesperidianblue says, " I was going to 7 dermatologist till 2 of them agreed that is rosacea other wasn`t shore what is it often they thought it was atopic dermatitis."

    93. misdiagnosed says, "During this whole ordeal, I have seen a dermatologist (in OH) 2x. THe first time she tried to convince me it was “in my head” and reluctantly prescribed an antibiotic for adult acne. 8 weeks later, she seemed a little more open to the fact that it could be demodex and prescribed metrogel. Last week, I asked for metronidozale in a pill format because the lotion only does so much. She agreed to call it in. It is helping, but I have good and bad days, depending on the “hatching” cycle." #385 misdiagnosed on 10.08.10 at 12:45 AM

    94. Maureen says, "I have had this now for about I would say 2 years when I was told I had rosacea and lupus. Now a new dermatologist tells me no it's dermographism,..."

    95. francois can says, "I just cant believe. Today I went to see a derm. She looked at my face closely with a tool like a magnifier and said I misdiagnosed myself. She said rosacea has 4 components and someone has to have at least 3 of them to be diagnosed rosacea.....She said I have a
    condition associated with neurovascular dilaiton..."

    96. LarsMM says, "...First I went to a regular doctor and even though he ran a few tests he couldn't tell me wheat the problem was. He told me I shouldn't worry since the redness was at that time "barley noticeable". At the end of the third summer (2010) I went to another doctor and got the same response. After this visit I got somewhat frustrated since I was well aware that I had not been this red a few years earlier, as a result I started reading online and came across rosacea. I got an appointment with a dermatologist and she confirmed that I had stage one rosacea...."

    97. 444 says, "...my doctor has failed on many occasions to diagnose me properly probably due to my young age at the time and has disregarded any possiblilty of rosacea since the beggining....'

    98. claire says, "...I am 34 years old and I was wrongly diagnosed 7 years ago. I have gradually seen since then my skin get progressively worse, it is now in its advanced stages. ..." #41 claire on 05.16.09 at 8:16 PM

    99. Rachelle C says, "My doctor diagnosed me with rosacea, delusional paristosis. The medications for these did no good. Then another dermatolgist with an allergist diagnosed me with demodex (skin mite) allergy. Since I have very many allergies, this was a good bet. I treat itchy and red areas with tea tree oil and have managed to reielve my problem almost completely. The dermatologist also thinks a monthly treament with Kwellada-P would help further." #76 Rachelle C. on 05.04.10 at 1:00 AM

    100. findingaway says, "So I am no further forward...I still don't really know what it is I'm dealing with... Rosacea, SD, KP. All?" 

    101. Just an update and to show the importance of knowing what you have, I saw a Rosacea specialist with 20 years of treating and research under his belt, and made the appointment saying "Trying to treat Rosacea" as the reason. The second I came in he was confused and wondered where the Rosacea patient was. He looked at me and told me I absolutely do not have Rosacea, he's seen thousands of cases over decades and it's simply not it. And it's not caused by being choked, ever. It was thinned skin due to Steroid Creams, and thankfully, he caught that because the General Practitioner who 'diagnosed' me with Rosacea prescribed steroid cream. The most alarming was that the general practitioner gave me Metrogel which I understand is meant to help Pimples, and I have absolutely zero of those. AlenaCena post no 68

    102. I've been to dermatologists in three different countries starting when I was 16, and I'm now 41. When I first started going to them, they didn't know a lot about eczema and dermatitis and the treatment course was antibiotics and cortozone creams. (Not much has changed) Even then I knew foods and hormones were triggers or the cause of the skin eruptions. I've had dermatologists tell me it's not rosacea and dermatologists tell me it is. One things for certain out of the more than 30 dermatologists I've seen in my life time, no two have had the same things to say. However last time I was at one, she did look up patronizing and say, yes we now know hormones can affect eczema...as if her telling me that made a whit of difference to what I have already known. In the UK, where they have now said it is rosacea, I have had no other tests. The dermatologists I've seen refuse to accept other countries diagnosis of food allergies. They refuse to take into consideration what I'm saying, about my upper eye lid cracking (it's been cracking there my whole life, so much so I've a deep scar) and the bubbling around my eyes, and over my brows. In the end, I think a they've learnt mo about the what some skin problems are, they seem to have bunched the rest as rosacea. Which appears to me to be a blanket term, covering a huge amount of things. Melania post no 66

    103. I had a misdiagnosed case of demodex for many years. It was misdiagnosed as bacterial acne/hormonal acne and "allergic conjunctivitis". None of the treatment my 4 dermatologists prescribed ever worked. It turned into a really bad case of ocular rosacea. Early this year, I took the 2 week Oral Ivermectin + Oral Metronidazole treatment. It worked. ElaineA post no 2 

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    • View the 13 minute 25 second full version
    • We have a new home page intro video for our website. 
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    • Wow this is incredible and I must praise you for this and I wish people now will watch this and understand the time and effort to make this organization.
    • Great job Brady. This is the best trailer video for rosacea.
    • 'Two videos shared hundreds of times on Facebook feature a Kenyan doctor alleging that two drugs -- ivermectin on its own and hydroxychloroquine in combination with zinc and azithromycin -- are effective in treating Covid-19. But the claims are false: there is no scientific evidence that either medication can help treat the disease caused by the novel coronavirus. " Ivermectin and hydroxychloroquine are not proven Covid-19 treatments, James Okong'o, AFP South Africa, AFP FactCheck 
    • Watch the long version!    
    • I have used dried Calendula flowers infused with coconut oil and applied this concoction for few months and it has amazing effects on erythema and soothes your irritating skin.
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    • Several years ago I experimented with MediaWiki for a couple of websites when I was an active webmaster back in the day. I really loved the format and how Wiki works and continue to love Wikipedia as my go to source for learning.  David Pascoe, who owns RS has used a Wiki for his site for sometime now but there aren't current contributors. However, you get the idea of what David did with his Wiki when it comes to rosacea and is an example of what I am discussing.  There are some pluses and minuses when it comes to using a Wiki, which is discussed on this official page at MediaWiki.  The RRDi could sponsor a Wiki if there were enough volunteers to handle it. Anyone interested in this should find the reply button and discuss. 
    • LEARN MORE (Forum) Affiliate Store Cosmetics
    • Thanks Rob for the tip. It may help others who are searching for a solution. 
    • Try Cetaphil Baby Wash & Shampoo with Organic Calendula.  Calendula is a traditional treatment for blepharitis symptoms.  It took 4 weeks of gentle wiping in the shower for conditions to improve, something that antibiotic/steroid drops could not do over 2 years.
    • Related to internet searches with regard to asking the question 'Is This Rosacea?' are other searches using Google regarding dermatological questions.  "The data of Google Trends was used to analyze the number of Google searches related to skin problems from January 2004 to December 2019. Thirty-four topics representing dermatologic complaints were identified." [1] Top 26 Topics  "Popularity of topics representing dermatologic complaints in proportion to “Scar” (adjusted data; Relative Search Volume (RSV) over time)." [1] Of the above 26 topics the ones related to rosacea are 'Itch' (#1), 'Skin Rash' (#3), 'Pustule' (#6), 'Comedo' (#10), 'Erythema' (#19), 'Papule' (#24), and 'Telangiectasia' (#26). [1] End Notes [1] Int J Environ Res Public Health. 2021 Mar; 18(5): 2541. ‘Dr. Google, What Is That on My Skin?’—Internet Searches Related to Skin Problems: Google Trends Data from 2004 to 2019 Mikołaj Kamiński,1,* Linda Tizek,2 and Alexander Zink2
    • The RRDi is pleased to announce that new members can sign in with Apple. This is an incredibly cool way to join our community and remain totally anonymous!  Plus is it so easy and secure! If you are not aware about Sign in with Apple read this page.  If you need support from Apple it is just a click away! Of course, our support volunteers are here to help if you need assistance.  If you choose, you can hide your email address and your identity when joining our community since Apple continues to make your privacy secure and the RRDi respects your privacy with our solid privacy policy. Our volunteer staff will not know who you are or your email address if you choose this setting that Sign in with Apple allows. 
    • Just added the following video in our Guest Forum (feedback) to encourage guests to post. 
    • "Treatment with oxymetazoline as adjunctive therapy with energy‐based therapy was safe, well tolerated, and reduced facial erythema in patients with moderate to severe persistent facial erythema associated with rosacea." Lasers Surg Med. 2021 Jan; 53(1): 55–65.Oxymetazoline and Energy‐Based Therapy in Patients with Rosacea: Evaluation of the Safety and Tolerability in an Open‐Label, Interventional StudyEmil A. Tanghetti, MD, David J. Goldberg, MD, JD,  Jeffrey S. Dover, MD, FRCPC,  Roy G. Geronemus, MD,  Zane Bai,  Nancy Alvandi, Stuart D. Shanler, MD, FAAD, FACMS 
    • Image courtesy of Contact Dermatitis  A recent paper reports of a "A 62‐year‐old man without a history of atopy had been experiencing episodic facial erythema for 30 years." [1] Over this period of thirty years he had been diagnosed with seborrheic dermatitis, rosacea, and finally allergic contact dermatitis (ACD).  This paper highlights that "To diagnose a patient with facial erythema is challenging." Furthermore, misdiagnosis is not uncommon when it comes to diagnosing rosacea. Especially is this true when differentiating rosacea from sensitive skin.  "This report highlights the significance of multiple causes of facial erythema in individuals, which may change over time. Patients with sudden flares, and where treatments only seem to give worse symptoms, should be referred for patch testing, since a damaged skin barrier may bring about polysensitization to the treatment. Once contact allergies have been found, the patientʼs original dermatitis can be investigated correctly. Patch testing with higher concentrations of brimonidine and a ROAT could be helpful in suspected cases of ACD." [1] Etcetera ROAT or PATCH Test Diagnosing Rosacea End Notes [1] Contact Dermatitis. 2021 Feb; 84(2): 121–122. Primum non nocere; the importance of evaluating the effect of treatment and considering side effects Thanisorn Sukakul, Jakob Dahlin, Cecilia Svedman 
    • A "study evaluated the efficacy and safety of dual-frequency ultrasound with impulse mode, for improving skin hydration and erythema in Asian subjects with rosacea and acne" published in the Journal of Clinical Medicine and the results state that "dual-frequency ultrasound with impulse mode appears to be effective and safe for improving skin hydration and erythema in patients with rosacea and acne." [1] We hope to hear more about this treatment. If you have used this treatment, please volunteer and post your experience in this thread by finding the REPLY TO THIS TOPIC button.  Does anyone find it odd that we haven't heard hardly any anecdotal reports of rosaceans discussing ultrasound for rosacea? If the clinical papers are correct that a dual frequency ultrasound improves phenotype 2 or phenotype 3, you would think we would have heard more about it by now. There was a short thread discussing it in 2015 at RF that dismissed the treatment. Sull asked this same question in 2014 at RF and no one responded. It must simply not be an effective treatment since if it was we certainly would have heard more by now. The above recent clinical paper on this subject using it in Asia stimulated me to ask what any of you may think about this subject? Dr. Bowe who volunteers on the RRDi MAC recommends using the Truth Vitality Lux Renew and states on her website, "I also recommend it to my patients for use in between our appointments to maximize their results from in-office procedures! It can complement procedures for tightening (Ultherapy, Thermage), redness (V-beam) or acne (Peels and Theraclear), allowing you to get more out of each treatment and extending the results so you can space those treatments farther apart." Etcetera  Dual-Frequency Ultrasound as a New Treatment Modality for Refractory Rosacea: A Retrospective Study. Safety and Effectiveness of Microfocused Ultrasound  for Treating Erythematotelangiectatic Rosacea Color Doppler Ultrasound  Evaluation of Management of Papulopustular Rosacea Microfocused Ultrasound Microfocused Ultrasound with Visualization (MFU-V) for rosacea Investigation of thyroid blood tests and thyroid ultrasound findings of patients with rosacea. Ulthera® System for Treatment of Subtype 1 Ultrasound accelerates skin healing, especially for diabetics and the elderly Safety of microfocused ultrasound with visualization in darker skin types End Notes [1] J Clin Med. 2021 Feb 18;10(4):834.  doi: 10.3390/jcm10040834. The Efficacy and Safety of Dual-Frequency Ultrasound for Improving Skin Hydration and Erythema in Patients with Rosacea and Acne Young Jae Kim, Ik Jun Moon, Hae Woong Lee, Chong Hyun Won, Sung Eun Chang, Mi Woo Lee, Jee Ho Choi, Woo Jin Lee 
    • RedMage,  It is good you have ruled out SIBO and any other gastric issues. The list of systemic cormorbidities in rosacea related to gastric issues is more than just SIBO, i.e., Gastroesophageal Reflux Disease (GERD) and other GI disorders. If the gut isn't related to rosacea then why do physicians continue to prescribe antibiotics which are released in the gut for rosacea?  And as you point out, we all know that what we eat or drink is somehow related to what happens on our face and we all know what those triggers are, and depending on our self control shows whether we have a clear face or one that breaks out in rosacea inflammation. Finding the cause is as you have pointed out is somehow related to the cure. Finding the cure is the RRDi slogan. So what is your current rosacea regimen to control your rosacea?  You can read my current regimen in my blog.  RedVelvet posted something related to your post. 
    • At some time I also though that my Roscea has smth to do with the SIBO or another problem with jelaites, but after a series of tests, gastroscopy and colonoscopy, the doctors found nothing that could cause it. Everything was fine. In a way, it's a pity, because failure to find the cause prevents you from directing your treatment in a meaningful direction. On the other hand, evidently and in fact, my face redness changes significantly depending on what I eat.
    • One of our members came to the rescue so we are still in this for at least another year! Our financial page is transparent and you can view how we spend our donations. Our next project is to figure out how to get our members to be active. The first step is recognizing active vs inactive members. 
    • The RRDi is now showing the active members vs the inactive members since the non voting and the voting members haven't been engaging in any rosacea discussion for some time now. This has created a relatively inactive forum 'engagement' with fellow rosaceans which is really core to our mission (view the RRDi Mission).  Goal #7: To allow volunteer members to have a platform to voice their concerns about rosacea and to contribute information about rosacea. Our goal is 10K members.  Since the 1.4K members are not engaging in any discussion, we will be informing everyone whether a member is active or inactive.  The definition of an active member is one who posts a minimum of at least one post a month. If after one month a member does not post the member status is inactive. This means that access to the site will be visible to what a 'guest' user will be able to see. A member who is inactive may still post in the areas guests are allowed to view and automatically becomes an active member again, if the member posts again.   Active members will be able to view more content on our website about rosacea for thirty days and can enjoy the content. If they want to continue to view the content they must at the minimum continue with at least one post in the thirty day period, hopefully with some meaningful contribution to their fellow rosaceans who have joined the community, contributing to our Goal #7 mentioned above.  Ask not what rosaceans can do for you, but what can you do for rosaceans? INACTIVE MEMBER Steps to Become Active If you are a current non voting or voting member and not able to view certain parts of our website for content simply post something about rosacea or what you are using to treat your rosacea to become ACTIVE again. (1) Login to your account. If you have forgotten your login credentials use our contact form and give us your email address you used to register your account and we will help you gain back your access.  We will be happy to restore your active status once you have posted which gives you thirty days to view the rosacea forums for rosacea content. To continue as an active member requires you post at least one post a month which shows you are active and that encourages your fellow rosaceans to also be active since you are setting an example.  (2) Another way to become active is donate one dollar. That surely shows activity and we will happily change your status to an active member for thirty days.  Inactive Members Can Still Post! How can inactive members post and become an active member again?  Simple. Find an area you would like to post something, For example, one area still open to inactive members and guests is the FAQ forum. Pick any FAQ and login to your account and post something. That makes you active again! Another area you can post is the Community Support. If you are having issues logging into your RRDi member account use the contact form and explain your issue. Be sure to include your email address so we can resolve your login issue for you.  New Members If you are a new member you will remain as ACTIVE. As long as you remain a lurker you and not post within 30 days you will be inactive and be switched to an inactive member with guest privileges which allows you to post in areas of our forum still accessible to you. 
    • Investigative Report on Why Rosaceans Prefer Social Media This post is about rosacea and social media platforms where all the rosaceans have gone and is an in-depth deep dive into this subject. Before we look at some of the data on this it would be good to go back in time and look at the history of the internet and rosacea, before the advent of social media.   Sixteen years ago when the RRDi was founded by rosacea sufferers with the motive to form a grassroots patient advocacy group that could have a united voice to the medical community who at that time didn’t take any rosacea patient advocacy group for rosacea seriously because none existed. Does the medical community take seriously a united effort from any social media platform group on rosacea that is a grassroots patient advocacy group?  I will let you think about that question.  There were two such organizations formed in 2004, one by David Pascoe (and others) and the other, the RRDi which involved myself (and others) who split into two camps. David Pascoe opted to using an html website for his non profit organization for rosacea and we opted for the Invision Power Board platform. David’s non profit, the Rosacea Research Foundation, was a similar grassroots organization that was more popular, raising $16K in a very short time and then quickly disbanded by the end of 2005, donating the entire money raised to the NRS, which was ironic, since both the RRDi and the RRF were formed because rosaceans wanted their own grassroots organization and were not happy with the NRS and its organization, how it was spending its donations, mostly on private contractors owned by one of the NRS board members, and very little on rosacea research.  But the glimmer of hope is that the RRF shows what can be done with a grassroots patient advocacy non profit organization.  The RRDi software platform was Invision Power Board which evolved into the Invision Community. The forum platform software was extremely popular back in 2004 and is still used today by many organizations and companies.  The RRDi eventually hosted the entire website and forum on Invision Community servers. The RRDi continued to grow with members (1.3K in 2020) and small donations and over the course of almost seventeen years we have received around $15.5K which is around $900/year in donations. We did spend about $6K on education grants sponsored by Galderma and the rest spent to keep the website going and legally continue as a non profit with registration fees and published one edition of our print on demand journal. It does cost money to keep a non profit organization going, even if no one is receiving a salary, no employees and no payments to private contractors owned by one of the board members. We don’t do that. Everyone is a volunteer. Pro bono.  Then over the years the members and posts have dropped to nearly zero. We know we have traffic to our website because Google Analytics shows we do, nearly 4K visit our website each month, but they do not engage. So what happened? Where have all the rosaceans gone?  Back in 2004 there were many volunteers and they were working hard to create a grassroots, rosacea patient advocacy non profit organization. Where are they now? Around the same time the RRDi was formed, Zuckerberg began Facebook, a social media and social networking service, with a different but similar platform as the ‘forum’ style platform and Facebook took off and exceeded all expectations and became the number one social platform. Others followed, i.e., Instagram, Twitter, Reddit and that list goes on.  According to Search Engine Journal, in 2020 Facebook has 2.45 billion users, Instagram 1 billion users, Reddit 430 million, Snapchat 360 million, Twitter 330 million users, Pinterest 320 million, LinkedIn 310 million. So let's analyze where the rosaceans are on these social media platforms and what they are doing.  When you do a rosacea search on Facebook you can find where rosaceans have gone. The number one Facebook that comes up is the NRS with nearly 40K friends and 41K followers.  This non profit organization for rosacea has spent 10% of its donations on rosacea research over a twenty year period. 60% of the donations are spent on two private contractors owned by one of the board members. The Board Members of this Non Profit Organization are NOT rosaceans, and are comprised of businessmen (three), dermatologists (two), one RN, and a medical editor. For More Information. This non profit is heavily sponsored by pharmaceutical companies which is shown on its website if you scroll towards the bottom you will see the following: While this Facebook group is the most popular, do you consider this a grassroots patient advocacy group for rosacea or something else?     As far as known, the Rosacea Support Group is the next largest Facebook group with 15K followers and 14K likes. It states clearly that this is a non profit organization but there is absolutely no evidence that RSG is registered as non profit. This is David Pascoe's group and his website is making money because there are affiliate links and sponsors for rosacea treatments but there is no evidence that this group engages in any rosacea research or has any influence on the medical community.  RosaceaFacts on Facebook has 18K followers and likes and is run by the pharmaceutical company Galderma.  The Rosacea Spanish Facebook has 6K followers and nearly 6K likes.  Rosacea Awareness says it is an actual 'community' and the official link is to StudyKIK.com which is a site for clinical trials. The about page at StudyKik says, "StudyKIK is the leading website where clinical trial companies list their studies and eager volunteers find them to sign up instantly." The Facebook ABOUT page doesn't explain who is running it but on the MORE INFORMATION link at the bottom of the page it links to its Instagram page that doesn't explain who this Facebook account belongs to but obviously it is somehow connected to StudyKik who say they are 'volunteers.' Nevertheless, 5.5K follow and like this Facebook Group. Do you think this social media 'community' has any influence on the medical community as a voice for rosaceans?  It has 13K followers and likes.  If you know of any other rosacea Facebook groups which should be in this list, please find the reply button and let us know.  While there are rosaceans obviously on Instagram, figuring out which one is the most popular is difficult to say the least. Some of the ones who come up in the search box are #rosacea, #rosácea, #rosaceatreatment,  #rosaceaskincare, and this list goes on and on. For example, the NRS has an account shown below:  As previously mentioned about the NRS Facebook group and how this non profit represents businessmen and dermatologists who are the voice behind this organization and is not run by rosacea sufferers, apparently, the NRS Instagram isn't as popular with posts and followers as its Facebook group is.  If you know of an Instagram account that is more popular that should be mentioned, please find the reply button and let us know. There are rosaceans at Instagram but are any accounts representing rosacea sufferers as a united group that influences the medical community about rosacea?  Reddit appears to be the more popular social media website for rosaceans. There are 'subreddits' that are specifically made up of rosaceans while there are other subreddits that discuss rosacea, i.e., r/SkincareAddiction (1.2m members), r/30PlusSkinCare (124K members), r/medical (63.8K members), r/Accutane (29.6K members), r/AusSkincare (27K members) and others but we will mention one rosacea subreddit below:  You can see the number of members above in this subreddit and now lets try to figure out who runs this? Note below the results:    Does this give you an idea of who is running this huge subreddit?  Is this a registered non profit organization? Is it run by businessmen or medical professionals? What credentials are behind the moderators?  Why do they hide behind cryptic display names?  This gives you an idea of where the rosaceans have gone and rosaceans love it this way, behind cryptic display names. Do you think that this subreddit rosacea group with 21K members have any influence on the medical community to find the cure for rosacea or engage in any rosacea research?     Are there rosaceans on snapchat?  Did a search on 'stories' and got this result:  Did a google search with no results either. So if you know if there are rosacea sufferers on snapchat, can you please find the reply button to this post and tell us what you know.  Did a search on twitter with 'rosacea' and all sorts of 'tweets' come up but there isn't any one post that shows a united effort for rosaceans to come together into one cohesive patient advocacy group. Searched the 'National Rosacea Society' and discovered it has 3201 followers and 563 following on December 1, 2020  (which we mentioned about in Facebook and Instagram). Doesn't appear that there is any attempt with rosaceans to unite with twitter into one large group with a 'voice.'  Did a search on Pinterest using the 'board' as the choice and got a number of 'boards' shown below or you can see for yourself by clicking here.  The first one on the top left is Talonted Lex, a beauty blogger, who has rosacea and on Pinterest has 9.5K followers. The second one on the top row from the left is May Lindstrom Skin who has a  'lifelong battle with severe eczema and perioral dermatitis' with 2.6K followers at  Pinterest. The third one from the left top row is Clare Baucom who doesn't explain who she is but has 1.9K followers on her 'Rosacea Sensitive Skincare' and lots of over the counter treatments. This keeps on going but most of the 'boards' are selling over the counter treatments for rosacea. Do you know of any 'board' at Pinterest that is the voice of all rosacea sufferers in a patient advocacy united group that the medical community listens to?     Did a search on LinkedIn and not much happening with rosaceans at this social media business connection site. Professor Tony Chu started a charity named the The Acne & Rosacea Association UK with 57 members. Rosacea Care, who offers treatments for rosacea, is also listed. PCA who also offers treatments for rosacea is listed with 600 members. Not much happening with rosacea patient advocacy movements at LinkedIn.  Conclusion This is an in-depth look done in December 2020 searching where all the rosaceans have gone and they are happy posting in the above social media groups and could care less if there is any movement to create a grassroots rosacea patient advocacy group like the RRDi. So if you are happy with what is currently happening with where all the rosaceans have gone, good for you. Et Cetera What is your idea of what a rosacea non profit should be doing? Comparing Non Profit Organizations with their Mission How Non Profits Work Volunteering Benefits Grassroots Rosacea Non Profit Organization Reply to this Topic There is a reply to this topic button somewhere on the device you are reading this post. If you never heard about this topic and you learned about it here first, wouldn't it be a gracious act on your part to show your appreciation for this topic by registering with just your email address and show your appreciation with a post?  And if registering is too much to ask, could you post your appreciation for this topic by finding the START NEW TOPIC button in our guest forum where you don't have to register?  We know how many have viewed this topic because our forum software shows the number of views. However, most rosaceans don't engage or show their appreciation for our website and the RRDi would simply ask that you show your appreciation, please, simply by a post.    
    • 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. Invision Community Clients Some very large corporations use the Invision Community platform. Do you recognize any of these companies below? Are the above companies successful using the Invision Community platform?  If you scroll past the next section about downloading our beta versions of our mobile app you find two successful medical companies using the Invision Communities platform. While all the above companies have their social media accounts as well, these well known companies prefer to continue using the Invision Community Platform, and so does the RRDi prefer using this same platform because of its excellent features. We have invested our donations into using this platform. So if you find this platform not to your liking and prefer the social media style platform, we recommend two options for you:  (1) Watch this short video about social media rosacea platforms (2) Download either the Apple iOS or the Android mobile app to your device which is discussed next.  Mobile Apps 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.  Medical Clients Who Use Invision Community Platform Reply to this Topic There is a reply to this topic button somewhere on the device you are reading this post. If you never heard about this topic and you learned about it here first, wouldn't it be a gracious act on your part to show your appreciation for this topic by registering with just your email address and show your appreciation with a post?  And if registering is too much to ask, could you post your appreciation for this topic by finding the START NEW TOPIC button in our guest forum where you don't have to register?  We know how many have viewed this topic because our forum software shows the number of views. However, most rosaceans don't engage or show their appreciation for our website and the RRDi would simply ask that you show your appreciation, please, simply by a post.  
    • Invision Community "Grassroots movements are associated with bottom-up, rather than top-down decision making, and are sometimes considered more natural or spontaneous than more traditional power structures." [1] We have chosen the Invision Community platform to interface between members (allowing also a private Tapatalk private forum). We prefer this over the social media platforms which are obviously more popular, however, we do have accounts with the major social media platforms if you prefer that sort of engagement (scroll down to the subheading RRDi Social Media Accounts). If you are interested in volunteering at any of the social media RRDi accounts please join and volunteer (mention this when you register that you would like to volunteer to post in one of the RRDi social media accounts, i.e., Facebook, Instagram, Reddit, etc.). We need volunteers to moderate the RRDi social media accounts! Less than one minute trailer: 7 minutes 27 second grassroots video:  Social Media Groups are Top Down Decision Making  All the rosacea social media groups (except those run by the RRDi) are top-down decision making groups. Whoever runs the group, i.e., Facebook, Instagram, Reddit, Twitter, etc., make all the rules and you have no choice who runs the group. Whoever 'owns' the group makes all the decisions (rules) and are not grassroots decision making. There are few, if any, social media groups that are grassroots, letting the members make the decisions on how the social media group is run. The exception is our RRDi social media accounts which allows the members to choose who sits on the board of directors of the RRDi. The reason we are explaining this is that all the rosaceans have gone to social media. It you want to volunteer and manage or be a moderator of the RRDi Social Media accounts read this post and watch the video about volunteering.  RRDi Grassroots Organization The RRDi is a grassroots organization founded by rosacea sufferers who are volunteers. The board of directors are all rosacea sufferers and their motive to  volunteer is to help rosacea sufferers. Now compare that with who serves on the 'other' rosacea non profit organizations board of directors. [2] As far as we know there are only three other rosacea non profit organizations (ARSC, AARS, and NRS) and possibly one other, the AAD that might spend a tiny, tiny bit of money on rosacea research. All the board members of these 'other' non profits are NOT rosacea sufferers and are mostly comprised of businessmen and medical professionals (dermatologists) who have a vested interest in rosacea since they may receive a salary or benefit from money spent on private contractors used by the non profit organization, or receive compensation for attending conventions or meetings sponsored by the non profit organization. Follow the money where the non profit spends the most of its donations on, and if you take the time, you will discover it is very little on rosacea research. Why not watch the video on rosacea research to get you up to speed? You may wonder how non profits work? The members of the RRDi are mostly rosacea sufferers [rosaceans] and have a say who serves on the board of directors of the RRDi (the charter requires that the board members suffer from rosacea). The board of directors of the RRDi are sometimes chosen by the other board members but every five years the voting members of the RRDi may vote who may continue to serve on the board of directors. The members could replace the entire board of directors. This is bottom up decision making.  The other rosacea non profit organizations are NOT grassroots and work from the top down. How do the other rosacea non profit organizations choose their board members? Answer: Top down decision making.  What Motivates Board Members? Money is the motive on who makes the decisions on the spending of the donations with the 'other' top down rosacea non profits and if you follow the money you will find that the board of directors make sure they benefit in some monetary way. This is a top down direction since the other non profits are run by NON rosaceans and have their own personal agenda so that members of the board somehow benefit with some compensation with the spending of the donations. Money is usually at the root of any top down decision making process.  Grassroots Motive So if you have similar grassroots philosophy why not join the RRDi and volunteer. If money is your motive, go to the 'other' rosacea non profits. [2] If volunteering by helping other rosaceans is your motive, you have found the only grassroots rosacea non profit organization on planet earth. [3] Only One Non Profit Organization Run by Rosaceans There is only one non profit organization for rosacea founded by rosacea sufferers, this one, the RRDi. All the others are founded by non rosaceans and all you do is see who is serving on the board of directors and note how the board members on each rosacea non profit benefit how the donations are spent (each board determines how the donations are spent). Follow the money (where does most of the donations end up being spent on?). Donations Spent on What? If you could gather together say 10K rosaceans into one non profit organization for rosacea and fund a paper on a rosacea topic and receive from each member donating just one dollar, it would be a cinch to get a reputable medical clinician to investigate further into whatever topic is chosen and nail it to the wall with a double blind, placebo controlled, peer reviewed study. However, if you did get 10K rosaceans together to donate each $1 that would be a miracle in itself. What might that subject be? Alas, this dream, which began over sixteen years ago with the RRDi was formed, hasn't brought about such unity among rosacea sufferers. Instead, rosacea sufferers are splintered into private social media groups, i.e., Facebook, Instagram, Reddit, etc. and continue to parrot the non profit organizations for rosacea that are run by non rosacea board members with a top down decision making process.  And rosaceans prefer and love it that way. Do these social media rosacea private groups engage in any rosacea research? What do you think? Grassroots Glimmer of Hope for Rosacea However, there is perhaps a glimmer of hope. The owner of the Rosacea Forum, rosaceagroup.org, formed a non profit organization [RRF] in 2004 and gathered together a group of rosacea sufferers and collected a total of $16K and donated all of this to the NRS. So, it can be done. However, the RRF non profit for rosacea dissolved. What happened? Read for yourself. This example of the RRF is a grassroots non profit that actually did something in sponsoring their own research, except they gave the $16K to a non profit that is run from the top down. A brief glimmer of grassroots hope for rosacea. The RRF was a flicker of light in a dark rosacea world.  Grassroots Non Profits Beacon of Light An example of an excellent grassroots non profit organization beacon of light is the The Erythromelalgia Association that actually sponsors their own research on erythromelalgia, so it can be done, and is done by this grassroots non profit organization. Do you know of any other grassroots non profits that are an example like this? Why not tell us about it by replying to this thread? Watch the video on this page about the EA organization.  Rosacea Independent Sponsored Research  Is a grassroots motive something to consider, or are you content with the current status quo rosacea research being done by a 'top down' decision making process used by the 'other non profits for rosacea' whose board members are not suffering from rosacea? Do you think the paltry rosacea research being sponsored by these 'top down' 'other' non profit organizations for rosacea is the best that can be done? Are you aware of what most rosacea research being conducted is sponsored by? Most rosacea research is being sponsored by the skin industry. [4] Do you think a grassroots non profit organization for rosacea could sponsor their own independent rosacea research? As Miracle Max points out, 'It would take a miracle." Watch the video on this topic on this page.  Reply to this Topic There is a reply to this topic button somewhere on the device you are reading this post. If you never heard about this topic and you learned about it here first, wouldn't it be a gracious act on your part to show your appreciation for this topic by registering with just your email address and show your appreciation with a post?  And if registering is too much to ask, could you post your appreciation for this topic by finding the START NEW TOPIC button in our guest forum where you don't have to register?  We know how many have viewed this topic because our forum software shows the number of views. However, most rosaceans don't engage or show their appreciation for our website and the RRDi would simply ask that you show your appreciation, please, simply by a post.   End Notes [1] Grassroots, Wikipedia [2] Links, Other Non Profit Organizations  [3] Volunteering What Community Support Means to You? [4] Rosacea Research in Perspective of Idiopathic Diseases  Rosacea Research in Perspective of Funding
    • If you have any questions after watching this video find the reply to this topic button and our volunteers will try to answer them. 
    • This question, 'Is this rosacea?', is by far the most frequently asked question on the internet which you can find in any rosacea social media group on Facebook, Reddit, Instagram, Twitter or any other social media group where all the rosaceans have gone.  The questioner invariable wants a diagnosis or a confirmation that what is happening on their skin is rosacea. Did the questioner get a diagnosis from a physician?  Obviously not, otherwise, the questioner wouldn't need to ask a rosacea social media group whether rosacea is the diagnosis. This question is asked way over millions of times all over the internet. So that is why we include this FAQ as one of the top questions found on rosacea social media groups and you can read below, the Answer
    • The RRDi is please to announce a new video on the RRDi MAC: 
    • There is no need to panic about this condition and you can actually manage and control this condition. This condition does not own you, you own this condition.
    • Demodex mites are normal inhabitant of skin surface and found in low numbers in healthy individuals but when their numbers are increased and replicate they cause problematic conditions and cause rosacea because they secrete proinflammatory mediators which interact with skin resident immune cells and signaling pathways causing inflammatory responses.
    • HLA-DR is actually an antigen and is a biomaker of inflammation.
    • Depression is one further stage of chronic stress when you prolong the stress period for a longer period of time,it gradually steps into depression and you all know very well that stress is directly related to rosacea. even when you panic about something or any situation your skin suddenly shows the symptoms of rosacea out of nowhere.
    • Oxidative stress is something our body's cells go through and accumulate reactive oxygen species in cells and here antioxidants come into play which neutralizes these ROS by giving one electron to it and hence we talk about antioxidants heavily in skin care because oxidative stress causes ageing and related to inflammation which is a part of rosacea.
    • Intestinal bacterial overgrowth is really a major thing when considering rosacea because I have experienced personally when I have irritable bowel and disturbed intestine I understand that it is connected to my rosacea and intestinal bacterial overgrowth causes rosacea to worsen.
    • Bradykinin is a protein which causes inflammation and release by S. aureus family of bacteria which cause blood vessels to dilate and cause rosacea symptoms.
    • Yes epidermal barrier dysfunction should be considered when it comes to rosacea or other skin inflammatory conditions and I think the fatty acid lipid layer is disturbed in chronic skin condition and we need to dig the underlying cause of this issue.
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