A new report says, “Because Demodex mites are ubiquitous, their potential as human pathogens has often been ignored. This contribution focuses on the growing body of evidence linking Demodex mites with various skin disorders. Histologically, spongiosis and lymphoid inflammation are regularly seen in follicles containing Demodex mites. In animals, they are well established as a cause of mange, and a human counterpart-demodectic alopecia-appears to exist. There is also a statistical association between Demodex mite density and rosacea, facial itching, and chronic blepharitis. Papulovesicular rosacealike lesions and spiny blepharitis often respond to agents that reduce Demodex numbers. Although these observations are not sufficient to fulfill Koch’s postulates, Koch’s postulates are also not fulfilled for the association between brown recluse spiders and dermal necrosis or the association between streptococci and guttate psoriasis. The evidence linking Demodex mites to human disease has implications regarding treatment.”  [1]

Demodex and its connection with rosacea is probably the most researched and reported topic other than reports on metronidazole. [2] Yet demodex remains a hot topic that is debated and discussed not only by rosaceans but also in the medical community. For example, a couple of noted rosacea online gurus have dismissed the role of demodex in rosacea. One such rosacea guru said, “Rosacea experts all agree that this mite plays no real role in the development of progression of rosacea (except for the odd pustule).”  [3] The other rosacea guru says, “I have always pushed the line that demodex mites have thus far only been proven to be innocent bystanders in rosacea symptoms.” [4]

While demodectic rosacea remains a controversy, it will continue to play a significant role in more research and discussion and the list of articles written on this subject by researchers all over the world will continue to grow.  [5]

Sources

Accutane is being prescribed for rosacea more than ever according to anecdotal reports. More reports of accutane treatment for rosacea in low dose prescriptions seem to be the current popular treatment without much discussion on the risks and side effects.  Accutane was initially used to treat acne but has become quite common to hear of physicians prescribing it for rosacea. Particularly pregnant women should be warned clearly of the risks associated with accutane. A rosacean should ask his doctor what are the risks associated with taking accuatane, including the side effects and determine if the risks are worth the benefits. This what is called the risk-benefit analysis. If you decide to accept risks of this treatment,  you will discover later what these risks are for yourself but at least you were warned. Taking Accutane without considering the risks is like jumping into a dark deep hole blind folded. What you land on could hurt later.

Image Courtesy of Alternative Media Initiative

In recent years oral antibiotics are now given by dermatologists as a first line treatment for rosacea along with topical metronidazole.  Oracea has become the most recent popular antibiotic because it is low dose and touted as an anti-inflammatory rather than antibiotic, but nevertheless, is still an antibiotic. Generally speaking, taking these antibiotics for rosacea is long term since after short term use rosacea comes right back. Why is long term use of antibiotics the treatment?  According to Dr. James Del Rosso, professor of dermatology at the University of Nevada, says, ”We know that it’s best, in an ideal world, that patients are not on long-term antibiotic therapy. The reality is that patients are there for treatment, and part of the effective treatment that we have to date is giving them antibiotics. And so we’re caught in the middle until we have some better, definitive ways to solve the problem.” [1]  So what doctors are trying to do is reduce the dosage to a minimal amount that still treats the rosacea effectively, hence low dose tetracycline, Oracea. We have no idea what the long term effects of taking Oracea are since the safety of using Oracea hasn’t been established beyond nine months. All we do know is the long term effects of antibiotics since they have been used for a long time. What are the long term risks and side effects of antibiotic use?

Long Term Risks

There are many risks associated with long term antibiotic treatment and probably the foremost concern is antibiotic resistance which is is a type of drug resistance where a microorganism is able to survive exposure to an antibiotic. This problem is aggravated when “the greater the duration of exposure the greater the risk of the development of resistance irrespective of the severity of the need for antibiotics.” [2] There are, of course, other risks associated with long term antibiotic resistance including bacterial overgrowth, digestive problems usually due to changes in gut microflora, lower levels of phytoestrogens and compromising the immune system. [3] This doesn’t even take into account the many side effects of antibiotic treatment which are too many to list here. [4]

So a rosacean should ask his doctor what are the long term risks associated with taking an antibiotic, including Oracea, including the side effects and determine if the risks are worth the benefits.  This what is called the risk-benefit analysis. If you decide to accept long term antibiotic treatment, including Oracea, you will discover later what these risks are for yourself but at least you were warned.

For more information on this subject CLICK HERE.

Sources

[1] NPR
Doubts Raised Over Antibiotic Use for Acne by Allison Aubrey

[2] Wikipedia

[3] The Long-Term Effects of Antibiotics on Health and Immunity

[4] Antibiotics
The Merck Manuals

Artist Depiction of H Pylori

H Pylori (Helicobacter Pylori) has been a controversy with rosacea for some time now.  Some experts dismiss H Pylori’s role in rosacea and yet it remains a controversy since other rosacea experts continue to discuss H Pylori as a possible factor in rosacea. A report in January 2010 states that “Helicobacter pylori infection is implicated in the pathogenesis of extradigestive diseases such as acne rosacea…” A report by Mc Leer, Lacey and Powell in 2009 listed H Pylori as a possible factor in the pathophysiology in rosacea. One report in 2003 suggests “some form of relationship between rosacea and H. pylori infection.” Two reports in 1996 suggested H Pylori’s role in rosacea with titles such as “Eradication of Helicobacter pylori as the only successful treatment in rosacea” and “Acne rosacea and Helicobacter pylori betrothed.” Rebora suggested in 1995 that the “role of H. pylori is more probable in erythrotic rosacea than in its papulopustular and granulomatous stages.” [1] These are just a few reports suggesting H Pylori as a factor in rosacea.

When you consider the fact that H Pylori was ‘officially’ discovered in 1986 by Drs Marshall and Warren in Australia who both won the Nobel Prize in 2005 for this discovery and changed the textbooks about how bacteria can survive in the human stomach and its relation to ulcers and other gastric problems and the fact that this gram negative bacteria is considered an infection that half the world’s population is carrying with most being totally asymptomatic it is a wonder that anyone can even connect H Pylori with rosacea at all.  Yet the reports on H Pylori and rosacea keep coming out despite the fact that many reports negate H Pylori’s role in rosacea.

While there are many older reports suggesting H Pylori having some role in rosacea, newer reports dismiss this role. For instance, the late Dr. Kligman noted H Pylori’s controversial role in rosacea in his 2003 report. [2]

A report released in 2002 mentions ‘promising recent reports of beneficial H. pylori eradication’ in many cutaneous skin diseases except rosacea. [3]

A study published in May 2010 concluded, “There is no association between Helicobacter pylori infection and rosacea in current study.” [4]

Nevertheless, there are reports of H Pylori associated with rosacea indicating that eradicating H Pylori clears rosacea and discuss the possible cutaneous pathology of H Pylori to an autoimmune mechanism. A report in 2009 says, a “few case reports have documented associations between Helicobacter pylori infection and rosacea.” [5]

What is H Pylori and how does it relate to rosacea?

H Pylori is a gram negative bacteria that is considered an infection and harmful to humans.

According to one report, “more than 50% of the human population have long-term Helicobacter pylori infection.” [3] Wikipedia says that the diagnosis of H Pylori is done with different tests that are not failsafe and sometimes results in false positives.  How anyone can know for sure that 50% of the human population is infected with H Pylori is quite suspect. The percentage of ‘infection’ of H Pylori, if indeed it is an infection, may be more or less than 50% .

According to Wikipedia, “Helicobacter pylori is a Gram-negative, microaerophilic bacterium that can inhabit various areas of the stomach, particularly the antrum. It causes a chronic low-level inflammation of the stomach lining and is strongly linked to the development of duodenal and gastric ulcers and stomach cancer. Over 80% of individuals infected with the bacterium are asymptomatic.”

So, if 80% of individuals are asymptomatic and they only discovered H Pylori in 1986 how do they know that H Pylori is a human pathogen?  There is an amusing article, “So, What’s Your Problem with Gram-Negative Bacteria??,” that gets you thinking. Do you really think that medical science knows everything about H Pylori in a little over twenty years?  Obviously sometimes H Pylori is a human pathogen and runs amuck causing us problems. But in 80% of individuals H Pylori is asymptomatic and obviously is in the stomach for some reason, possibly for some nefarious purpose such as an ulcer, but it is quite possible for some beneficial purpose as well.  Could it be possible that a gram negative bacteria serves some useful purpose that as yet hasn’t been discovered? For instance, E. coli can help people and animals to digest food and help in providing vitamins but sometimes runs amuck causing some serious food poisoning. Could H Pylori have some beneficial yet undiscovered function for humans yet sometimes cause issues like E. coli does?

Could H Pylori be asymptomatic because it is helping us for some reason yet undiscovered, and sometimes for some yet undiscovered reason turns into a monster that causes problems like ulcers and rosacea?

Helicobacter pylori and rosacea.
Zandi S, Shamsadini S, Zahedi MJ, Hyatbaksh M
East Mediterr Health J. 2003 Jan-Mar;9(1-2):167-71.

Eradication of Helicobacter pylori as the only successful treatment in rosacea
Kolibásová K, Tóthová I, Baumgartner J, Filo V.
Arch Dermatol. 1996 Nov;132(11):1393.

Acne rosacea and Helicobacter pylori betrothed
Wolf R.
Int J Dermatol. 1996 Apr;35(4):302-3

May Helicobacter pylori be important for dermatologists?
Rebora A, Drago F, Parodi A.
Dermatology. 1995;191(1):6-8

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

[3] Helicobacter pylori infection in skin diseases: a critical appraisal.
Wedi B, Kapp A.
Am J Clin Dermatol. 2002;3(4):273-82.

[4] Risk factors associated with rosacea.
Abram K, Silm H, Maaroos HI, Oona M.
J Eur Acad Dermatol Venereol. 2010 May;24(5):565-71. Epub 2009 Oct 23.

[5] Helicobacter pylori infection and dermatologic diseases.
HERNANDO-HARDER AC, BOOKEN N, GOERDT S, SINGER MV, HARDER H.
Eur J Dermatol. 2009 Sep-Oct;19(5):431-44. Epub 2009 Jun 15.

[6] Small Intestinal Bacterial Overgrowth: A Comprehensive Review
Andrew C. Dukowicz, MD, Brian E. Lacy, PhD, MD, and Gary M. Levine, MD
Gastroenterology & Hepatology Volume 3, Issue 2 February 2007

[7] ice2meetyu’s report July 4, 2010

[8] Rosacea and digestive problems

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 and how the diagnosis of rosacea seems to cover many different skin diseases.

[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

Copyright 2010 by Brady Barrows

If you were around in August 2007, there were headlines such as, Scientists unmask the cause of rosacea, [1] and UCSD Researchers Discover Cause of Rosacea [2] not to mention all the other headlines which created quite a stir in all the online rosacea groups and brought a lot of hope for rosacea sufferers. These articles seemed to conclude that rosacea’s mystery is resolved and within time a treatment would be found to eradicate rosacea. These startling headlines were the result of a paper published by researchers at UCSD associated with Richard L Gallo, et.al, in a study published by  Nature Medicine [3]. This paper concluded:

“These findings confirm the role of cathelicidin in skin inflammatory responses and suggest an explanation for the pathogenesis of rosacea by demonstrating that an exacerbated innate immune response can reproduce elements of this disease.”  More info on cathelicidins.

If you will notice in the above statement that the findings suggest an explanation for the pathogenesis of rosacea. Gallo, et.al, never said they found the cause of rosacea.  The newspapers came to the conclusion that now all the mystery of rosacea is over and we now have the cause nailed down. All we have to do is wait for the treatment. This is not exactly the truth.  While the research of Gallo, et.al, at UCSD is remarkable and insightful, the jury is still out on what causes rosacea. And while the jury is still out, there is more news worth mentioning that may be related to cathelicidin, peptides or antigenic proteins.

According to The Irish Times, Irish Scientists blame bacteria as the cause of rosacea according to a different study. This study is the result of researcher Dr Kevin Kavanagh, a senior lecturer in biology at NUI Maynooth. According to The Irish Times, “Working with the Mater hospital, the researchers previously identified a Bacillus bacterium inside Demodex mites. The bacteria release two proteins that trigger an inflammation in patients with facial rosacea.” [4]

At least one type of bacteria is associated with demodex mites and rosacea. This bacteria is Bacillus oleronius according to an NRS press release [5] which quotes Dr. Kavanagh as saying, “This indicates that the Bacillus bacteria found in the Demodex mite produce an antigen that could be responsible for the tissue inflammation associated with papulopustular rosacea.”  A study released in September 2007 by Dr. Frank Powell, et.al, also concluded, “Antigenic proteins related to a bacterium (B. oleronius), isolated from a D. folliculorum mite, have the potential to stimulate an inflammatory response in patients with papulopustular rosacea.” [6] Another study released in January 2010 also said, “The strong correlation provides a better understanding of comorbidity between Demodex mites and their symbiotic B oleronius in facial rosacea and blepharitis.”  [7]

In the recent past, a couple of noted rosacea online gurus have dismissed the role of demodex in rosacea. One such rosacea guru said, “Rosacea experts all agree that this mite plays no real role in the development of progression of rosacea (except for the odd pustule).”  [8] The other rosacea guru says, “I have always pushed the line that demodex mites have thus far only been proven to be innocent bystanders in rosacea symptoms.” [9] However, the NRS continues to sponsor research into demodex and the RRDi just released a paper by Dr. Kosta Y. Mumcuoglu and Dr. Oleg E. Akilov on demodex’s role in rosacea. [10] In fact, there is probably not many other type research with as many papers on the subject of demodex except for a scarce few. [11]

Another theory on the cause of rosacea is that irritable bowel syndrome is related to rosacea. [12] This theory also is related to bacteria in the gut and that using antibiotics clears rosacea. An article in the St. Louis Dispatch [13] says that one doctor has been prescribing Xifaxan, an antibiotic for gastric problems and reports clearing of rosacea. Previously to this report a study in Italy published that eradicating the bacteria in the gut had improved rosacea. [14] Our rosacea online guru had this to say about SIBO and rosacea:

“This sort of abstract just make me shake my head. If you read quickly you will think that this abstract suggests that Small Intestinal Bacterial Overgrowth (SIBO) causes rosacea. What this abstract is saying that is that rosacea sufferers seem to have a higher incidence of SIBO than non rosacea sufferers.” [15] “The link between SIBO and the papules and pustules of rosacea is still a mystery.” [16]

There is also a continuing controversy as to whether H Pylori is a factor in rosacea and I have written an article on this subject for your interest.

So in conclusion, the jury is still out on what causes rosacea but it appears that the jury hasn’t ruled out demodex quite yet, despite what the rosacea gurus tell you. The headlines may one day come to another ’cause’ of rosacea or highlight the ones discussed above. Whatever happens, keep an open mind, since we still don’t know what causes rosacea. We may be surprised one day to actually read a headline that says truthfully what the cause of rosacea is.

For more information on the cause of rosacea and other theories on this subject click here.

[1] Scientists unmask the cause of rosacea
August 06, 2007|Alison Williams, Los Angeles Times Staff Writer

[2] UCSD Researchers Discover Cause of Rosacea
UCSD News Center

[3] Increased serine protease activity and cathelicidin promotes skin inflammation in rosacea
Kenshi Yamasaki¹, Anna Di Nardo¹, Antonella Bardan¹, Masamoto Murakami², Takaaki Ohtake³, Alvin Coda¹, Robert A Dorschner¹, Chrystelle Bonnart^4,5, Pascal Descargues^4,5, Alain Hovnanian^4,5,6, Vera B Morhenn¹ & Richard L Gallo¹
Nature Medicine 13, 975 – 980 (2007)
Published online: 5 August 2007 | doi:10.1038/nm1616

[4] Study finds cause of rosacea
Claire O’Connell
The Irish Times – Tuesday, July 14, 2009

[5] New Study Shows Role for Bacteria in Development of Rosacea Symptoms
NRS Press Release, May 3, 2004, Suzanne Corr / Barbara Palombo

[6] Mite-related bacterial antigens stimulate inflammatory cells in rosacea.
Lacey N, Delaney S, Kavanagh K, Powell FC.
Department of Biology, National University of Ireland, Maynooth, Co. Kildare, Ireland
Br J Dermatol. 2007 Sep;157(3):474-81

[7] Correlation between Ocular Demodex Infestation and Serum Immunoreactivity to Bacillus Proteins in Patients with Facial Rosacea,
Li J, O’Reilly N, Sheha H, Katz R, Raju VK, Kavanagh K, Tseng SC.
Ophthalmology. 2010 Jan 14,

[8] page 110 quote
Beating Rosacea Vascular, Ocular & Acne Forms
Geoffrey Nase, Ph.D.
Nase Publications 2001

[9] Mar 29, 2007 R-S post by David Pascoe

[10] The Role of Demodex Mites in the Pathogenesis of Rosacea and Blepharitis and Their Control
Kosta Y. Mumcuoglu, Ph.D., Oleg E. Akilov, M.D., Ph.D.
Journal of the Rosacea Research & Development Institure, Vol.1, No.1

[11] For a partial list of Demodex in rosacea and acne click here.

[12] For more information on rosacea and SIBO click here.

[13] New way to treat skin disorder
By Cynthia Billhartz Gregorian, St. Louis Post Dispatch, 04/29/2010

[14] Small intestinal bacterial overgrowth in rosacea: clinical effectiveness of its eradication.
Parodi A, Paolino S, Greco A, Drago F, Mansi C, Rebora A, Parodi A, Savarino V.
Department of Internal Medicine, Gastroenterology Unit, University of Genoa, Genoa, Italy.
Clin Gastroenterol Hepatol. 2008 Jul;6(7):759-64

[15] SIBO eradication clears rosacea: are you serious ?
May 7th, 2008, by David Pascoe

[16] Gut Bacteria and Xifaxan get some press coverage
April 30th, 2010, by David Pascoe

"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]

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

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.

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

Elimination Diets (sometimes also referred to Exclusion Diets) was first proposed by Dr. Albert Rowe in 1926 and expounded upon in his book, Elimination Diets and the Patient’s Allergies, published in 1941.

Rosacea Trigger Avoidance is usually what is proposed by the NRS Factors That May Trigger Rosacea Flare-Ups which includes diet triggers, of which 18 are proposed:

Foods:
Liver
Yogurt
Sour cream
Cheese (except cottage cheese)
Chocolate
Vanilla
Soy sauce
Yeast extract (bread is ok)
Vinegar
Eggplant
Avocados
Spinach
Broad-leaf beans and pods, including lima, navy or pea
Citrus fruits, including tomatoes, bananas, red plums, raisins or figs
Spicy and thermally hot foods
Foods high in histamine

Beverages:
Alcohol, especially red wine, beer, bourbon, gin, vodka or champagne
Hot drinks, including hot cider, hot chocolate, coffee or tea

While probably most rosaceans after learning about the NRS Factors That May Trigger Rosacea Flare-Ups either from what others have told them or from their physician or on the internet may try to avoid items on this list in their diet the results from avoiding these items in their diet may prove helpful to some but many report otherwise. This is because there has never been proven in any clinical study, except one, a rosacea trigger that will trigger a rosacea flare up in every case. Not one. The only exception is a study done by JK Wilkin that discovered that it was not the caffeine in coffee that produces flushing but instead the heat. [1]

Apparently some, according to this thread, feel that if a rosacean decides to try avoiding any of the rosacea diet triggers proposed by the NRS or some other source that this is an elimination diet. For example, a rosacean decides to avoid spicy and thermally hot foods then one has engaged in an elimination diet.  Dr. Michael agrees with me that this is not the case for he answers my question about this subject with the following statement:

“No, simply avoiding known or suspected triggers is not an elimination diet because this approach starts with the answer the elimination diet is designed to ask. Namely, what are my triggers or sensitivities?

A proper elimination diet involves two phases:

(1) an strict elimination phase whereby all potential offending foods and chemicals are avoided and

(2) a slow, systematic reintroduction of each potential offending food and chemical class in an attempt to identity your own individual sensitivities.” [2]

While an elimination diet may help you discover what is triggering your rosacea it is probably one of the more difficult diet approaches to take and certainly isn’t a popular one for there are few reports available that this has been successfully accomplished with rosacea. Simply avoiding certain food and drink which is what rosacea trigger avoidance is all about certainly isn’t an elimination diet. Click here for more information on rosacea triggers.

Sources

[1] Coffee a Trigger for Rosacea? Good News for Coffee Lovers!

[2] Michael_V post #3    [Michael is a physician]

Glendale Communications Group, Inc. has as one of its clients the National Rosacea Society according to this page along with a long list of impressive clients if  you will notice in the category, non profit organizations:

If you click on this search and type in Glendale Communications Group you will see the following results:

You will note above the name Sam Huff as the president of Glendale Communications Group, Inc.  Notice who is the president of the NRS at this link, yes it is Sam Huff.  Here is a screen shot of the page that mentions Sam as the president of the NRS on the NRS web site:

Now notice the following information shown below (if you care to do the search yourself, go to this link and type in Park Mailing and Fulfillment:

You will note that Sam Huff is the president of Park Mailing and Fulfillment, Inc.

Now, if you take the time to scroll down this Form 990 from the NRS:

Please scroll down to the section entitled, Form 990EZ, Section VI, Five Highest Paid Independent Contractors, you will note the names of these two contractors and the compensation given to these two private contractors:

Compensation Paid to the following:

Glendale Communications Group, Inc. —– $400,291
Park Mailing & Fulfillment, Inc. —————-$118,477

Total———————————————–$518,768

Here is a snapshot of the pdf:

NRS Form 990 - Five Highest Paid Private Contractors

The total amount received by the NRS in 2008 in revenue (including donations) is noted on the first page of Form 990 and is shown to be $757,817. So of the total in revenue 68% went to two private contractors owned by the president of the NRS, Sam Huff.

68% of the total donations received by the NRS

were spent on two private contractors owned by

Sam Huff, President of the NRS.

How much did the NRS spend on rosacea research in 2008?

Here is a snapshot of

Form 990EZ, Part I, Grants and Similar Amounts Paid in Excess of $5000:

If you scroll down till you find the above page the total research grants came to $87,500.

That means that of the total donations received in 2008 the NRS spent 11.5% on rosacea research. That means that for every dollar donated to the NRS 11 and half cents went to rosacea research.

11 and half cents spent on rosacea research

for every dollar donated to the NRS.

For more info click here.