Sign in to follow this  
Followers 0

Is Rosacea A ‘Complicated Diagnosis Path’ And Mysterious Disorder?


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 New York Times, “In a Perfect World, Rosacea Remains a Problem,” [20] 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. Pascoe says that saying rosacea is mysterious and baffling is "disingenuous to push this statement on anyone" and as "egregious." [1]

Pascoe 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? Dermatologists are not baffled either, nor do they 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, but before citing what others say about rosacea’s mystery, confusion and bewilderment, lets note what Pascoe himself says about rosacea with the following:

"Sometimes (but no longer) called acne rosacea, rosacea is surprising because of how common it is and secondly how poorly understood it is." This quote is made by David Pascoe on the home page of his flag ship website on rosacea, first paragraph under the heading "About rosacea:" Is describing rosacea as 'poorly understood' disingenuous or egregious? What do you think? Now let's look at what the NRS says about rosacea, which is an organization Mr. Pascoe wholeheartedly supports:

On April 4, 2011 the National Rosacea Society said rosacea is [a] "widespread but poorly understood facial disorder." [19] On April 1, 2010, in a news release from the NRS, Dr. Jonathan Wilkin, chairman of the NRS medical advisory board, spoke of rosacea as a "widespread but poorly understood disorder." [21]

Pascoe, the director of the now defunct, Rosacea Research Foundation, was instrumental in donating over $18K to the National Rosacea Society who says that rosacea is a 'widespread but poorly understood facial disorder' and as far as we know has never explained why the NRS can push such a 'disingenuous' statement on the public, or for that matter, why David also repeats this phrase on his own website. Are there any other disingenuous or egregious statements pushed on the public that rosacea is mysterious, baffling or a poorly understood facial disorder? What about the following statements about rosacea's baffling condition? Are the statements below disingenuous or egregious? The NRS and Pascoe can call rosacea 'a widespread but poorly understood facial disorder' statement yet Pascoe says it is wrong for me to says rosacea is baffling and mysterious? What do you think? Do you think that it is ok to say rosacea is poorly understood but it is wrong to say it is baffling or mysterious?

Let's look at what some noted authorities on rosacea say about this subject, as well as, what medical authorities say about rosacea and see if you think the following quotes are "disingenuous and egregious." You be the judge.

Statements About Rosacea

"The cause of rosacea is complex, poorly understood, and likely multifactorial, with significant proposed contributions from dysfunctional cutaneous vasculature and innate immunity." [24]

The late Dr. Albert Kligman, a noted rosacea expert, wrote in 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]

"Today's expanding knowledge of the many potential signs and symptoms of rosacea can help unmask this widespread but poorly understood facial disorder now estimated to affect more than 16 million Americans. " [10a]

“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]

Mysterious and Baffling

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 is not ‘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 in this article you are reading. A rosacea expert, now deceased wrote in a noted paper on rosacea, "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”." [11] What Dr. Kligman wrote is exactly why I started the thread at RF to gather anecdotal reports about this. And many did report that their visit to a dermatologist was quite short.

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. The New York Times article quoted above said about this, "Online support groups devoted to rosacea have become a way for the uninitiated to make a diagnosis. (Not a recommended practice.)" [20]

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. The general direction we are moving towards is a classification based upon phenotype rather than subtypes. [27]

Conclusion

We are still on the road to understanding this mysterious disorder. Yes there is improvement. For Pascoe 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 because rosacea is not only a 'widespread but poorly understood facial disorder (Pascoe's own words),' but also 'baffling, mysterious and bewildering (Barrows' own words)', not only to rosacea sufferers but also dermatologists.  

Not everyone agrees with David Pascoe despite his large following, the websites he owns devoted to rosacea, and his many posts on rosacea. 

Here are more examples to consider that rosacea is indeed baffling, mysterious and bewildering:

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]

A paper written by Rhodes, et.al, discusses the difficulty of diagnosing facial inflammatory dermatoses in early stages. [22]

Dr. Jason Rivers, a Vancouver dermatologist and associate editor of The Skin Therapy Letter, "stresses that rosacea is underdiagnosed, misdiagnosed, undertreated and often misunderstood." [23]

An interesting thread about this same subject:

When a red face isn't rosacea is everyones doctor checking?

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."

Another report mentions "this challenging and often confusing clinical entity." [25]

"There is no official standard or universally accepted definition of rosacea and it has been considered to be a cutaneous reaction pattern or typology with case clustering around characteristic clinical features....While the National Rosacea Society Expert Committee diagnosis and classification system have been incorporated into basic, clinical and therapeutic investigations, information on associations between subtypes; the relative prevalence of these features among subtypes; and quantitative and qualitative aspects of these features in rosacea have been sparse..." [26]

We have moved from a classification of rosacea into subtypes to a.better classification into phenotypes. [27]

Experience My Rosacea' purpose centers on "the common and often damaging misconceptions surrounding the condition." [28]

 

End Notes

[1] RRDi journal Issue 1 Review: an unfortunate mix

an editorial by David Pascoe

Curiously, Mr. Pascoe had this comment to say when discussing an article about Neurogenic Rosacea:

"Is rosacea already complicated enough that another subtype is only going to make diagnosis and care trickier?" Scroll to the bottom of the article, last paragraph before the blog comments, under the subheading, "A Good Idea?"

[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

[10a] NRS, Clues Can Save Millions, Monday, April 4, 2011

[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.

[19] Clues Can Save Millions
Monday, April 4, 2011

[20] Skin Deep - In a Perfect World, Rosacea Remains a Problem
The New York Times, April 24, 2008

[21] Rosacea Riddle Now Threatens More Than 16 Million Americans
National Rosacea Society News Release April 1, 2010

[22] Outcome of facial rashes with non-specific histological features: a long-term follow-up of 64 cases
Lesley E. Rhodes, Richard A. G. Parslew, John Ashworth
Journal of Cutaneous Pathology
Volume 22, Issue 2, pages 160–163, April 1995
Article first published online: 27 APR 2006
DOI: 10.1111/j.1600-0560.1995.tb01400.x

[23] Red in the face
Embarrassment, stares and discrimination plague those suffering from rosacea
BY MARILYN LINTO ,QMI AGENCY, Toronto Sun, FIRST POSTED: MONDAY, JULY 4, 2011 2:00:01 EDT AM

[24] Neurogenic Rosacea: A Distinct Clinical Subtype Requiring a Modified Approach to Treatment
Tiffany C. Scharschmidt, MD, John M. Yost, MD, MPH, Sam V. Truong, MD, Martin Steinhoff, MD, PhD, Kevin C. Wang, MD, PhD, Timothy G. Berger, MD
ARCH DERMATOL/VOL 147 (NO. 1), JAN 2011

[25] Facial Plast Surg Clin North Am. 2013 Feb;21(1):127-136. doi: 10.1016/j.fsc.2012.11.004.
Rosacea: Pathophysiology and Management Principles.
Chauhan N, Ellis DA.

[26] The British Journal of Dermatology
An observational cross-sectional survey of rosacea: Clinical associations and progression between subtypes
J. Tan, U. Blume-Peytavi, J.P. Ortonne, K. Wilhelm, L. Marticou, E. Baltas, M. Rivier, L. Petit, P. Martel
Note: Quote taken from, Four Kinds of Red in the Face, Rosacea subtypes have significantly different symptoms, May 2, 2013 (dailyRx News)

[27] ROSCO Panel Recommends New Approach on Rosacea Diagnosis by Phenotype

[28] Experience My Rosacea sponsored by Galderma

Edited by Brady Barrows



Sign in to follow this  
Followers 0


User Feedback


There are no comments to display.



Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now