A report by the new ROSIE [ROSacea International Expert] Group reports that, “Classification of rosacea into stages or subgroups, with or without progression, remained controversial.”  This new group is comprised of “European and US rosacea experts.”  Two of the experts in the group are MAC members of the RRDi,  Dr. Draelos and Dr. Jensen. The report, Rosacea – global diversity and optimized outcome: proposed international consensus from the Rosacea International Expert Group, was released by J Eur Acad Dermatol Venereol. 2010 Jun 23.

This is not a new controversy.  The late Albert Kligman, a noted expert on rosacea, stated in 2003 about the NRS classification of rosacea into four subtypes and one variant:

” In my view this is a vast oversimplification which will not solve the diagnostic dilemmas that confront us. I see no reason not to give equal nosologic status to granulomatous rosacea, rosacea conglobata, rosacea inversa (formerly called pyoderma faciale), rosacea fulminans, edematous rosacea (a devastating variety) or combinations with seborrheic dermatitis, lupus erythematosus, acne vulgaris, and still other variants. Reducing the classification to four sub-types does little to clarify and eliminate the inherent complexities of this mysterious disease.”  [1]

Another report released after the ROSIE group report mentioned above had this remark about how a ‘proper standardization’ is needed:

“It is to be remarked that the quality of most studies evaluating rosacea treatment is rather poor, mainly due to a lack of proper standardization. For a major breakthrough to occur in the management of rosacea, we need both a better understanding of its pathogenesis and the adherence of future clinical trials to clearly defined grading and inclusion criteria, which are crucial for investigators to correctly compare and interpret the results of their work.” [2]

This controversy is based upon the fact that the NRS classification is based not on nosology but rather on symptoms. No doubt this controversy will continue until more is known about the cause of rosacea. Until then, diagnosis of rosacea sometimes results in misdiagnosis.

[1] A Personal Critique on the State of Knowledge of Rosacea
Albert M. Kligman, M.D., Ph.D.

[2] Rosacea Treatments: What’s New and What’s on the Horizon?
Gallo R, Drago F, Paolino S, Parodi A.
Am J Clin Dermatol. 2010;11(5):299-30

"Bewildered" Courtesy www.rosemaryharris.net

Copyright 2010 by Brady Barrows

According to David Pascoe rosacea isn’t confusing, mysterious, or bewildering at all. David Pascoe seems to have rosacea all nicely packaged into one coherent solution with his sponsored web sites containing hundreds of editorials and news items with two rosacea online groups that number into the thousands who are no longer confused or bewildered at all about rosacea under his guidance. In an article in the NY Times, “In a Perfect World, Rosacea Remains a Problem,” Pascoe is reported to have “used various topical gels and antibiotics for 15 years, but he remained a “Rudolph,” and now has it all under control and rosacea is no longer a mystery to him any more and says that anyone who says rosacea is mysterious, confusing and a bewilderment simply doesn’t know what they are talking about.

After all, David is the founder of Rosacea Support and states emphatically, “Rosacea cannot honestly be characterised as a baffling condition.” [1] Is this true?  Rosaceans are not baffled by rosacea and do not find rosacea mysterious or confusing?  What do you think?

First, the cause of rosacea is still unknown, and second, the cure is not available yet. Not everyone agrees with Pascoe and here are a few quotes what others say about rosacea’s mystery, confusion and bewilderment:

The late Dr. Albert Kligman wrote as recently as 2003 about the “inherent complexities of this mysterious disease.”  [11]

“Rosacea is a complex and often misdiagnosed condition.” [2]

“”Rosacea is a skin condition as misunderstood as sensitive skin..” [3]

“”Rosacea is a very common, but often misunderstood…” [4]

“Although the basic pathophysiologic aspects of this enigmatic disorder remain mysterious, our ability to improve and control it is increasing…” [5]

“Rosacea is a mysterious skin disorder affecting tens of millions of individuals worldwide.” [6]

“Despite being common, acne rosacea remains mysterious.” [7]

“Rosacea, also referred to as acne rosacea, is a mysterious and chronic disorder of the skin.” [8]

“One of the most “mysterious” skin conditions is rosacea. Even experts know very little about rosacea…” [9]“

“As if today’s economy were not stressful enough, growing millions of Americans now face the embarrassment of a mysterious red-faced disorder that can wreak havoc on their emotional, social and professional lives……’The early clues to rosacea are confusing for many people because the signs and symptoms often come and go, and are easily mistaken for something else,’ said Dr. Jonathan Wilkin, chairman of the NRS medical advisory board.” [10]

“What immediately stands out, which may shock the uninitiated, is the striking degree of controversy, conflict, confusion and contradictions, among the thicket of reports from all over the world. The parvenu to rosacea research will likely be puzzled by these quandaries, which may be off-setting to some, but an attraction to those who like to engage in fields where perplexities reign. There are profound disagreements among “experts” who write and talk about rosacea. I state forthrightly that the state of knowledge regarding the classification, pathogenesis, diagnosis and treatment of rosacea is embarrassing, if not scandalous, when compared to the impressive advances in all other fields of dermatologic research.”—Albert Kligman, M.D.  [11]

There are many other statements that many feel rosacea is indeed mysterious and baffling. The confusion about rosacea is discussed almost daily in the rosacea online rosacea groups and experts remark how rosacea is often confused with acne and other skin conditions. Does everyone who is searching the internet online for web sites on rosacea as well as posting in all the online rosacea groups and forums understand completely everything about their rosacea? Do they report successful visits from dermatologists, never complain about the diagnosis, are completely satisfied with the treatment, and are never bewildered or frustrated or confused about rosacea?  Do all the dermatologists and physicians know everything about rosacea? What you think?  Do you agree with David Pascoe that there is no confusion, mystery and bewilderment with rosacea? Yet that is what he wrote when slamming my editorial in the Journal of the RRDi:

“The Associate Editor, Brady Barrows, says that there is a “mystery and bewilderment surrounding rosacea that baffles not only the experts but also those suffering with this disease.” This is a tired statement that is regularly peddled by Barrows. I find this egregious on 2 fronts. Firstly it is patently false and secondly this statement becomes self-fulfilling with the poor quality of some of the articles that follow in the journal. Rosacea cannot honestly be characterised as a baffling condition…” [1]

Do you agree with David that what I wrote is ‘false’ and rosacea cannot be ‘baffling’ ?

A recent survey sponsored by Galderma/NRS  says rosacea is a ‘complicated diagnosis path.’  Note the statement:

“The results, which are part of the national educational campaign Rosacea SKINsights sponsored by Galderma Laboratories, also reveal 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.” [12]

Some think that rosacea isn’t a complicated diagnosis path at all and would have us believe otherwise and I responded to such remarks here. As to what might be considered in diagnosing rosacea it isn’t as simple as some might want to believe. Every week in the rosacea online groups newbies arrive and ask the question, ‘Is this rosacea?’ along with images of their face expecting a simple diagnosis. They are told over and over again that online diagnosis is impossible and to find a dermatologist to diagnose their condition. To say that rosacea is a simple diagnosis would negate all the work of the NRS ‘expert committee’ who has standardized and classified rosacea. The NRS ‘Expert’ Committee said one of the reasons for standardizing and classifying rosacea is because ‘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.” [13] Rosacea mimics must be differentiated and complicates the diagnosis which is sometimes misdiagnosed. I have been collecting a list of anecdotal reports on the misdiagnosis of rosacea.

The NRS ‘expert committee’ had this to say about the nosology of rosacea:

“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.

Therefore, the National Rosacea Society assembled a committee to develop a standard classification system that can serve as a diagnostic instrument to investigate the manifestations and relationships of the several subtypes and potential variants of rosacea. Standard criteria for diagnosis and classification of patients are essential to perform research, analyze results and compare data from different sources, and may further serve as a diagnostic reference in clinical practice. The standard terminology will also facilitate clear communication among a broad range of basic, clinical, and other researchers; practicing dermatologists, primary care physicians, ophthalmologists and other specialists; health and insurance administrators; and patients and the general public.

The committee based the standard classification system on present scientific knowledge and morphologic characteristics. This avoids assumptions on pathogenesis and progression, and provides a framework that can be readily updated and expanded as new discoveries are made. As knowledge increases, it is hoped that the definition of rosacea may ultimately be based on causality, rather than on morphology alone.” [13]

What the ‘expert committee’ did was to classify rosacea into subtypes and one variant and to help physicians diagnose rosacea better which is now beginning to help. Dermatologists who are aware of this new classification system are better informed than in the past but as the above report acknowledges, this ‘provides a framework that can be readily updated and expanded as new discoveries are made’ and that the “definition of rosacea may ultimately be based on causality, rather than on morphology alone.”  [14] And recently there is now a controversy about this classification based on morphology alone. For more info on this controversy, click here.

We are still on the road to understanding this mysterious disorder. Yes there is improvement. But to say that the book is closed on rosacea and it is no longer confusing, baffling and mysterious is a disservice to the rosacea community. We need more knowledge and research on rosacea.  Not everyone agrees with David Pascoe despite his large following.

Here are more recent examples to consider that rosacea is indeed mysterious and bewildering if you consider the following article two articles:

The Rosacea Dilemma, which state:

“Unfortunately, the pathogenesis of rosacea is still a mystery…..Unfortunately, rosacea tends to wax and wane despite therapy.” [15] and also the article, “We are making progress with both acne and rosacea–but, let’s face it! We still have a long way to go.” [16]

“This reveals the high level of misunderstanding and confusion that surrounds rosacea, a chronic disorder primarily of the facial skin, often characterized by flare-ups and remissions.” [17]

“Despite being one of the most common skin disorders, its pathogenesis remains unclear and controversial.” [18]

Sources

[1] RRDi journal Issue 1 Review: an unfortunate mix
an editorial by David Pascoe

[2] The Rosacea Forum Moderated by Drs. Bernstein and Geronemus

[3] Dermilogica

[4] skinlaboratory.com

[5] Unraveling the mystery of rosacea. Keys to getting the red out.
Postgrad Med. 2002 Dec;112(6):51-8, 82; quiz 9.
Landow K., University of Southern California School of Medicine, Los Angeles, USA.

[6] Possible Causes of Rosacea
This Little Understood Skin Disease Is Not Curable, But Treatable

[7] Acne Rosacea
By Ruth Werner, LMP, NCTMB

[8] Nursing Comments

[9] Rosacea Care for Clear Skin

[10] NRS
Untold Millions Suffer Embarrassment of Conspicuous Red-Faced Disorder

[11] A Personal Critique on the State of Knowledge of Rosacea Albert M. Kligman , M.D., Ph.D.
Department of Dermatology, University of Pennsylvania, Philadelphia, PA, U.S.A.

[12] New Survey Reveals First Impressions May Not Always Be Rosy For People With The Widespread Skin Condition Rosacea
Medical News Today

[13] Standard classification of rosacea:
Report of the National Rosacea Society Expert Committee on the Classification and Staging of Rosacea

[14] Morphology of Rosacea

[15] Healthy Aging
The Rosacea Dilemma
Physicians are still not sure what causes rosacea, requiring them to tailor treatment plans to each symptom.
Arisa Ortiz, MD
Posted on: July 14, 2009

[16] We are making progress with both acne and rosacea–but, let’s face it! We still have a long way to go.
Del Rosso JQ.
J Drugs Dermatol. 2010 Jun;9(6):603-4.

[17] New Survey Reveals First Impressions May Not Always Be Rosy For People With The Widespread Skin Condition Rosacea

[18] The potential role of microorganisms in the development of rosacea.
Lazaridou E, Giannopoulou C, Fotiadou C, Vakirlis E, Trigoni A, Ioannides D.
J Dtsch Dermatol Ges. 2010 Nov 8. doi: 10.1111/j.1610-0387.2010.07513.x.

Copyright 2010 Brady Barrows

Obtaining a diagnosis for rosacea may seem to be fairly straight forward but considering that there are reports of misdiagnosis it would be good for rosaceans to be educated on this subject so that if one experiences a misdiagnosis it will not be a surprise and will understand better how a diagnosis is obtained. A recent survey by Galderma/NRS says that the results “highlight the low awareness and complicated diagnosis path for this common condition.”

First and foremost is that diagnosis is the sole prerogative legally and ethically of a physician. So the information in this editorial is not meant to substitute or replace a physician’s diagnosis but is simply for a rosacea sufferer to understand the subject of a rosacea diagnosis for educational purposes. Knowing what is involved in obtaining a diagnosis of rosacea is quite helpful in basic Rosacea 101 which is a subject I am quite familiar with and wish to pass on this information freely to those who wish to increase their rosacea knowledge.

There is no histological, serological or other diagnostic tests for rosacea and a diagnosis is simply arrived at by a patient history and physical examination. [1] Some clinical tests may be done, i.e., blood tests and skin biopsies, to rule out rosacea mimics. The NRS Classification System into subtypes and one variant is the first clearly defined proposal to identify and classify rosacea. [2] It is of interest to note that this classification system is based on morphology rather than causality. Understanding this classification and variant system is the beginning of a nosology for this disease. Dermatologists who are keeping up with this new classification system are now able to better diagnose rosacea. It may be that your physician is familiar with this new classification system but some physicians are not keeping up with this latest system and may be relying on past knowledge on this subject.

Physical Examination & Tests

Frank Powell, MD, who served on the NRS ‘expert committee‘ that classified rosacea says in his book, “There is no laboratory test or investigation that will confirm the diagnosis of PPR. Specific investigations may be required to rule out similar appearing conditions (many of which will be identified by listening carefully to the patient’s medical history and examining the skin lesions). These include skin swabs for bacterial culture, skin scrapings for the presence of demodex mites, scrapings for fungal KOH and fungal culture, skin biopsy for histologic examination, (and rarely culture) skin surface biopsy for demodex mite quantification, patch tests, photopatch tests, and very rarely systemic workup wih appropriate blood tests and radiological examinations.” [3]

To rule out demodectic rosacea “Potassium hydroxide examination, standardized skin surface biopsy, skin biopsy, or a combination of these are essential to establish the diagnosis.” [4]

In some cases to rule out other rosacea mimics such as lupus and scleroderma it is suggested that obtaining an ANA blood test and other blood tests might be considred. [5] Another test you might consider having is the Autologous serum skin test (ASST) to rule out chronic uticaria.

One report says it is necessary to perform individual bacterial cultures and antibiograms on rosacea patients.

Another report suggests testing mucin to differentiate lupus.

Another test to consider is to rule out Grave’s disease with blood tests. According to Ladonna, “…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…”

So from the above tests it shows that a five minute visit to your dermatologist who simply diagnoses you with rosacea and doesn’t take any of the tests mentioned above to differentiate other rosacea mimics might mean you could receive a misdiagnosis. There is anecdotal evidence that many rosaceans report a quick diagnosis in five minutes or less.

More info on Misdiagnosed Rosacea

Taking a Patient History and Biopsies

In Powell’s last chapter, [3] entitled, General Considerations, he suggests asking questions to the patient in taking a history, specifically:

(1) Asking about polycythemia?

(2) Whether the patient has been using a steroid cream?

(3) Any other medication such as niacin or antacids?

(4) Whether there has been any frequent flushing?

(5) Any complementary or alternative medicines, i.e., herbal products?

(6) Eye symptoms?

(7) Any family history of rosacea?

Biopsies to rule out demodectic rosacea is another important consideration. One report suggests a biopsy to rule out Morbus Morbihan.

If you physician neglects to ask any of the above questions you might simply bring the above answers to these questions to his attention in a respectful tone so that a proper diagnosis of your skin condition can be obtained. Not knowing the answers to the above questions may hinder a proper diagnosis.

As more information on diagnosis is discovered that is pertinent to this article it will be updated.

References

[1] National Rosacea Society, Answer to Question 5
http://www.rosacea.org/patients/faq.php#test

[2] Classification of Rosacea
http://www.rosacea.org/class/classysystem.php

[3] Rosacea Diagnosis and Management by Frank Powell
with a Contribution by Jonathan Wilkin

[4] Demodicosis: a clinicopathological study.
Hsu CK, Hsu MM, Lee JY.
J Am Acad Dermatol. 2009 Mar;60(3):453-62

[5] Scroll to Alba’s Post #6 about ANA Blood Tests

Copyright 201o Brady Barrows

While misdiagnosis of rosacea is not a massive problem, it comes up quite often in articles and clinical studies on rosacea. This is because sometimes the definition of rosacea is vague and the classification of rosacea into subtypes remains controversial. [1]  The most common misdiagnosis is acne vulgaris. However because of the number of rosacea mimics misdiagnosis does indeed occur. The next most common ones are Seborrheic Dermatitis, Perioral Dermatitis, and Pityrosporum Folliculitis. You may view some photos of rosacea mimics to see how confusing this may seem. However, if your dermatologist takes the time to get a history and physical exam, usually your diagnosis will be correct. For some anecdotal and other reports of misdiagnosed rosacea click here. To understand better how a proper rosacea diagnosis can be obtained click here. Diagnosis of rosacea may seem simple to some but it that were the case then cases of misdiagnosis would be rare. Reports of misdiagnosis are not uncommon.

[1] Classification of Rosacea Remains Controversial