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

When I read the scathing review [1] of the Journal of the Rosacea Research & Development Institute [2]  by David Pascoe and had recently been told personally by David not to mention the NRS or the RRDi on any of his web sites [3] there was no other recourse other than to defend my position by publishing this apology on my own web site. David and I go back about ten years emailing each other in the annals of online rosacea history and if you search for my posts on his Yahoo Rosacea Support Group [4] you will find I was tolerated for some time before I wasn’t allowed to post any more and was graciously banned in 2007.  For those of you who have no idea why David doesn’t tolerate me and writes such a scathing review of the journal that I have been working on for over two years as a volunteer this might prove interesting to know our history and why he  wrote such a horrible review of the journal that not only myself, but many others tirelessly worked on as volunteers for many hours over a long period of time.  If you think it is easy to put a rosacea journal together, why not try it yourself sometime and see if you can do better than we did. David Pascoe has experience in forming a non profit organization for rosacea which was dissolved several months after it was created as you will discover in this apology.

Or another possibility is to organize a non profit organization and do it like the NRS which pays its staff through independent contractors. [5] That way you could sponsor some rosacea research and spend 60% of the donated funds on the independent contractors. You could get a lot more done if the staff was paid since volunteering isn’t for everyone. Which would be more difficult to run?  A non profit that pays its staff or a non profit with volunteers?  Does David Pascoe have any experience running a non profit with volunteers? If so, was it a smooth operation with no glitches?  Was it a perfect non profit organization for rosacea that is supposed to be without any flaws and worthy of donating to?

David Pascoe has a history with putting together a non profit organization with volunteers. [6] David has first hand information on how it is difficult for volunteers to work together. How David gained this experience and how he organized a non profit  came about  in 2004 when a historic chat organized by Warren Stuart brought some principal rosacea internet personalities together to form a non profit organization because the current state of non profit organizations for rosacea was wanting. These rosacea sufferers wanted to do something about the current direction and spending of the NRS and felt that it could be done better. Or as the description published next to David’s photo says, “It was his frustration with official treatments that lead to the creation of the Rosacea Support Group. It is a natural progression to now continue, and be a part of, a foundation dedicated to much-needed rosacea research.” [7]

The enthusiasm for this non profit was intense.  While I was one of the principals in this movement the private discussions of some with David Pascoe changed this movement into two camps.  One was led by David Pascoe who formed the RRF [8] and the other group formed the RRDi [9].  By the end of 2005 the RRF dissolved due to a problem amongst the board of directors after raising $18K in donations and subsequently gave 89% of these donations to the NRS.  How did David accomplish raising $18K in donations? David is an excellent webmaster and has created not only his own web sites on rosacea but also a yahoo group and an open source forum attracting thousands of rosaceans who follow his editorials and news on rosacea. On his advertising promotion to potential sponsors his experience on how to attract visitors is impressive. [10] That is how David was able to convince rosacea sufferers to donate to the RRF in a very short time and then turn over most of it to the NRS and shut the RRF down. David is able to convince people that if you donate to who he says it will be the best thing you can do for rosacea. He is very convincing.  He can also convince you that the RRDi is not worth anything. Why would David want to criticize and lambaste the RRDi?

The RRDi continued to plug along with scanty donations [11] and with a few volunteers.  It can be a challenge to organize and raise volunteers who will continue with a project. However over a two year period I came up with the idea of publishing a journal with the volunteers in the RRDi MAC [12] asking them if they would contribute an article for our journal.  Some were too busy to volunteer but a few did indeed respond. It took a long time to receive these articles.  We organized a team of proof readers. Of the total number of volunteers who began proof reading on this project which was eleven, only three stuck it out and worked through the entire project. Joanne Whitehead, Ph.D., was the editor in chief who organized the layout and worked tirelessly for many hours.

During the past few years while directing the RRDi I personally contacted David and asked him to join the RRDi and take over as director.  David declined. I asked Warren Stuart, the assistant director of the RRDi to contact David and ask David to join the RRDi and take over the direction.  I know that David is very good at what he does and I wanted the RRDi to succeed.  Surely if he was on board he would make the RRDi succeed.  Warren reported back that David declined. Twice he was offered the position to take over the leadership of the RRDi.  Some on the RRDi board thought I was crazy to offer this to David, but I knew that if he did it would be for the best interests of the RRDi.  Look what he did by raising $18K in so short a time!  Surely he would be wonderful for the job! David knows how to drive traffic to his web site and attract sponsors. [10]  My most recent appeal to David to join he RRDi was also ignored by David. Alas, David doesn’t want to volunteer or help the RRDi, but instead, has chosen to castigate the Journal of the RRDi and give full support to the NRS.  My most recent editorial on the NRS can be read by clicking here.

Why do you think he would be so cruel to the efforts of all these volunteers who contributed unselfishly to the production of this journal? Nevertheless, the RRDi will continue to plug along as it has for the past six years and we will continue to devote volunteer hours to fulfill the mission statement of the RRDi despite the criticism of David Pascoe. For more information on this topic read the article, Is Rosacea a ‘Complicated Diagnosis Path’ and Mysterious Disorder?.

Sources

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

[2] Journal of the RRDi

[3] Digital Davo’s Galderma Editorial

My editorial on The Truth

[4] Search Yahoo RS Group ‘brady barrows’

[5] Sam Huff, Glendale Communications Group, Inc., Park Mailing and Fulfillment, Inc.

[6] Rosacea Research Foundation

[7] RRF President – David Pascoe, BSc(Hons)

[8] See number [6]

[9] Rosacea Research & Development Institute

[10] David states, “The resources of the Rosacea Support Group are well established on the internet, approaching 100  thousand unique visitors per month. This web site receives traffic for internet users searching for information on dozens of rosacea related areas. Currently the web site has front page ranking for people searching for important rosacea search terms. For example check the following search result pages;  just diagnosed with rosacea, oracea, metrogel, red face, demodex mites, eucerin, photoderm and fiancee.” Source

[11] The total donations received from 2004 through 2009 was $3547.37. More info

[12] RRDi Medical Advisory Consultants

Copyright 2010 Brady Barrows

Digital Davo wrote an interesting editorial on Galderma wanting to control the rosacea market and I posted a remark that I thought his editorial on Galderma was interesting.  Dave then posted this comment after my initial comment:

“The NRS has a list of sponsors that allows the NRS to pursue their educational campaigns. Galderma appears at the top of the list and has been there for many years of course.”

I then posted a comment about the NRS which is shown above and captured a screen shot of it before Dave removed my post above along with his previous comment about the NRS which initiated the above post and was in harmony with his changing the subject to the NRS. Then Dave said I wasn’t allowed to comment on the RRDi or the NRS anymore and removed the above post along with his previous post about the NRS.  Here is my editorial on this topic.