Guide

Thanks for the tip mchatham. I haven't heard of this product before. Maybe we will hear more good reports like yours with this product? I can't find how to buy this stuff on the the net. What is the link?

The RRDi is please to announce that Joanne Whitehead, Ph.D., has been appointed to serve on the board of directors:

http://irosacea.org/....php#jwhitehead

Dr. Whitehead has written an article for the RRDi which will be published later this year by the RRDi and has been pre-published by Elsiever:

http://www.ncbi.nlm....5?dopt=Abstract

The RRDi is a non profit organization of volunteer rosacea sufferers who have come together to find the cure for rosacea.

Maybe this is the place? Have you found any other site for dating rosaceans?

Valerie Fox has announced her resignation from the board of directors. Valerie graciously volunteered to serve on the RRDi board of directors from the start of this organization but is too busy to serve on the board anymore. I personally what to thank Valerie for all her volunteer efforts and how she was instrumental in getting our non profit status approved by the State of Hawaii and the IRS. We will miss Valerie and wish her the best in her career.

We now allow guests to post here without registering. Guests and Inactive Members are privileged to visit some of our website which had a vast amount of information about rosacea. You must be an active member to have full access to all our information on rosacea. For more information. 

FAQs
If you are newly diagnosed, post your question in this thread or in the FAQs that are already posted. Ask about anything.

However, if you browse the FAQs, usually your question has already been asked so you might want to browse through the FAQs for a while and see if your question is posted already. Here are a couple to get you started:

Simple Regimen Controlling Rosacea 

Will I Develop Rhinophyma?

Does Rosacea Progress In Stages?

Repetition
Please understand and indulge us when we REPEAT over and over the same point, since when we do, we are emphasizing something we know is important and you should consider carefully, since this post is for rosacea newbies.  To repeat, we repeat important points over and over again. Please indulge us. 

Diagnosis
It would be good to get a diagnosis of what skin condition you are suffering from since you may NOT have rosacea but something else. Read this post about self diagnosis or this one on internet diagnosis.  If you haven't gone to a doctor to get a diagnosis and really feel like asking 'is this rosacea?' please read this post. 

As for treating rosacea from the inside (oral treatment), you may want to read this post on nutritional deficiencies or this post on the gut. As for what topicals, there is not one treatment, whether oral or topical that works for every rosacean, which is what we have dubbed the rosacea x-factor.

Prescription Treatments 
Usually, with a well informed dermatologist, the current state of the art treatment for rosacea is Oracea and Soolantra, the gold standard currently. This treatment is a combination using oral, timed release, low dose doxycycline and a topical ivermectin. A well informed dermatologist prescribes this now as a first line of treatment and asks you to return in 30 days to see the results. Old school dermatologists may prescribe a higher dose doxycycline along with topical metronidazole. In each case you need to come back to the dermatologist for an assessment if the treatment is working, usually in thirty days. 

If after a month or more with this treatment the skin isn't improved, there are a number of other treatments used when rosacea isn't responding to the standard treatments.  Since some old school dermatologists who are not keeping up with the gold standard are prescribing topical metronidazole and an oral antibiotic, which could be a tetracycline (usually doxycycline) or minocycline. Again, the physician will ask you to try this treatment and come back in a month to review the results. Sometime this old school treatment with metronidazole and antibiotic works. However, if it works for everyone we wouldn't have this post since not everyone responds to this old school treatment approach. 

Data has suggested that Topical Calcineurin Inhibitors (TCIs) are more commonly prescribed for rosacea according to one paper from Korea. 

If your results are unsatisfactory, your dermatologist might try another treatment. You may want to review When Rosacea Resists Standard Therapies.  More information on prescription treatments for rosacea. 

Over the Counter Treatments or Non Prescription
The RRDi recommends the Cosmetic ZZ cream, one of our sponsors, Demodex Solutions, which is an over the counter topical treatment.

There are a number of other demodectic treatments for rosacea, including a popular treatment using horse paste.

There are others as well as Diaper Treatment and the list keeps growing. When we hear any anecdotal report on what rosaceans say improves their rosacea we try to list the treatment in our store if it is over the counter and available on Amazon. 

As for alternative treatments, i.e. natural,  or over the counter treatments, the number has grown to such a huge array in the armamentarium treatment for rosacea which is a multi-million dollar industry for both prescription and non prescription treatments, that sorting through these can be bewildering. Our affiliate store is a huge database of over the counter, non prescription treatments, not only for rosacea treatment, but for other skin conditions and the some odds and ends.  Our non profit gets a small fee if you purchase an item in our store which helps us keep our web site going. 

Rosaceans 
So, that is why the RRDi exists, since the common bond of members is we are all searching for a better way to control rosacea.  You may post in our member forum by registering with an email address. You may post in our private forum by registering with an email address. Since many rosaceans now prefer private social media rosaceans groups, we have paid for a private Tapatalk forum for those who want total privacy. Our member forum is secure and has all the rosacea data so we hope you join. What is the difference between a public and a private forum? Answer. You may want to understand our policy on Anonymity, Transparency and Posting.

Searching
First, you need to be sure what skin condition you are suffering from, since you need to rule out a number of rosacea mimics or other skin conditions. The RRDi recognizes thirteen rosacea variants, so it would be important to get a proper diagnosis. We can't over emphasize this, and we are redundant in recommending this. Differentiating Rosacea from Other Skin Conditions. 

So the question is whether you have been properly diagnosed with rosacea and what phenotype? Can you get a diagnosis on the internet?

It has been stated in some papers on rosacea when treatment for acne exacerbates the condition that a diagnosis of rosacea may be a consideration (more info on diagnosing rosacea). Rosacea skin is usually described as sensitive so sometimes it is best to be careful not to use too many treatments at the same time since you may be making it worse. Sometimes you may need to let your skin heal on its own for a few days to allow your skin some time to recover from the treatments which may have done more harm than good.

There isn't one treatment for rosacea since what condition you may have could result in a different diagnosis later, such as a rosacea mimic or a rosacea variant.  The RRDi recognizes thirteen variants of rosacea. Yes, we repeat information to emphasize points. 

Since there isn't one treatment that works for every rosacean we have dubbed this the Rosacea X-Factor. Rosacea has been described by one doctor as "probably a collection of many different diseases that are lumped together inappropriately." There has been a controversy on the subtype classification of rosacea since it was announced in 2002. The RRDi has endorsed the Phenotype Classification of rosacea which is a superior classification than subtypes. So if your physician says you have a subtype, your physician isn't keeping up with the latest state of the art diagnosis of rosacea. 

Most rosacea sufferers follow the advice of a physician. You should at the very least be sure to get a proper diagnosis of what your skin condition is. Some who have followed the advice of their physician are successfully treated and remain happy campers. Usually these patients never post in forums like this one, since they have moved on in life and follow the advice of their physician and have their rosacea controlled with prescription treatment. If you have never been diagnosed and decide to see a dermatologist you may want to know what to ask your physician. 

Others, who join this forum, usually are frustrated with the treatment offered and find rosacea confusing and a bewilderment. Some others claim that this isn't the case at all and have rosacea all under control. There are a significant number of rosaceans who have been misdiagnosed and you should be aware, this may happen to you. 

There are a significant number of rosaceans who use the various light therapy devices, whether offered by a physician or simply purchase their own light devices.  However, even these, after some time find these light devices wanting. There are a significant number of rosaceans in this forum who have tried all the various treatments offered by dermatologists and the pharmaceutical prescription treatments and found them wanting and use various over the counter or non prescription or natural treatments to control their rosacea. The number of treatments stagger the imagination and the list keeps growing. Our store offers a mere fraction of these treatments (our non profit organization receives a small fee if you purchase an item through our affiliate store). 

One recommendation is to just take a few days to let your skin heal on its own and only apply cool water to your skin. You may find that you have simply used too many treatments on your rosacea sensitive skin and you just need your skin to heal on its own. Then, apply one rosacea treatment at a time to see what happens rather than multiple treatments since you have no idea what may be exacerbating your skin if you are using multiple treatments. 

Browse and read the posts in this forum to educate yourself on what others are doing to control their rosacea. You will quickly discover that what works for one rosacea sufferer does not necessarily work for another. There are a number of alternative and non prescription (over the counter) treatments for rosacea that some report work for them.

Try using one (or two) treatments at a time since it is difficult to know what is working and not working for your skin if you are using three or more treatments on your skin. Using more than one treatment, especially three or more will be extremely difficult to decide what treatment is actually working. If you decide to take oral treatments (prescription or non prescription) for rosacea, you may want to try them one at a time, slowly increasing another oral treatment to see what is working or what is not working. 

Others have tried trigger avoidance, which is an accepted medical treatment for rosacea, and is usually always mentioned by physicians. Probiotic treatment for rosacea is now an acceptable medical treatment for rosacea. The gold standard state of the art treatment is usually what a well informed dermatologist will prescribe to rule out demodectic rosacea. If your rosacea isn't responding to standard treatments, you may want to consider When Rosacea Resists Standard Therapies. 

Finally, post questions in the different threads and also post what results you are experiencing. Others with similar experiences may help you. Be positive and try to remain calm, you will get your rosacea under control, as many in this forum have reported. If you are concerned about joining the RRDi all you need to join and post is an email address and you can hide behind a cryptic display name of your choosing so no one knows who you are. Read this post if you still have concerns about your privacy. Or join our private Tapatalk forum. 

Newbies Should Post
We encourage you to post and become actively involved with the RRDi forum. We really need rosaceans who want to volunteer. Of course, you don't have to volunteer, which is what the word means, "a person who freely offers to take part in an enterprise or undertake a task." You should volunteer because you want to volunteer. The RRDi can improve if you simply post your concerns and questions or what you have found to improve your rosacea. 

Get your RRDi Tee Shirt

Reply to this Topic

There is a reply to this topic button somewhere on the device you are reading this post. If you never heard about this topic and you learned about it here first, wouldn't it be a gracious act on your part to show your appreciation for this topic by registering with just your email address and show your appreciation with a post?  And if registering is too much to ask, could you post your appreciation for this topic by finding the START NEW TOPIC button in our guest forum where you don't have to register?  We know how many have viewed this topic because our forum software shows the number of views. However, most rosaceans don't engage or show their appreciation for our website and the RRDi would simply ask that you show your appreciation, please, simply by a post.  

Use this forum for FAQs about rosacea. You may find the list of the most frequently VIEWED questions since probably your questions may be the same of others. 

Browse through the questions before you ask, since it probably has already been asked. Spend at least a half hour in our FAQs and you will probably learn more in a half hour than you spend at the social media platforms for hours. 

However, if you do have a question not listed in this category, please feel free to post your question by clicking on START NEW TOPIC button at the top level of FAQs.  

Or you may search the entire forum for a topic that interests you by typing in the search box top right corner your inquiry or look at all the categories of rosacea topics. 

If you have a complaint, a good category for complaints is this one.  Hopefully a fellow rosacea sufferer will read about your complaint and have empathy. 

If you think you may have rosacea and are curious whether or not you do have it, we recommend you read this post. 

The RRDi is sponsoring a new publication, RRDi Report, Volume 1, No. 1, which will be released in 2008. We are asking for the MAC members to volunteer to write an article on rosacea and conribute for this project as a volunteer. We will publish this as a print on demand book and the profit for the sale of this book will be used to put in the general fund to use for rosacea research. If you would like to volunteer for this project let me know in this topic whether you could help in either of these two ways:

(1) Work on the editorial staff (let me know your skills)

(2) Write an article for this publication

So far I have received a few replies from the MAC members:

(1) From: Neil Shear, MD

Subject: RE: volunteering to write an article for a book

Date: September 6, 2007 2:14:24 AM HST

I would be very interested to provide a chapter on the place of camouflage makeup. I have over 20 years experience in the area, and run a camouflage clinic at our University Hospital. I know this is of great value to our rosacea patients.

Neil Shear

_____________________________________________

(2) Edit out

_____________________________________________

(3) From: Peter Drummond, Ph.D.

Subject: RE: volunteering to write an article for a book

Date: September 6, 2007 6:12:50 PM HST

Hello Brady,

My student, Daphne Su, and I would be interested in writing a chapter on psychological aspects of rosacea for the book.

Best wishes,

Peter Drummond

_____________________________________________

(4) From: Raymond Peat, Ph.D

Subject: Re: volunteering to write an article for a book

Date: September 13, 2007 9:12:23 AM HST

I'll send you a draft of an article in a few days.

_____________________________________________

(5) From: Kosta Y. Mumcuoglu, PhD

Subject: RE: Volunteering to write an article

Date: September 22, 2007 3:38:15 AM HST

Dear Mr. Barrows,

Dr. Akilov and myself would be interested in writing a chapter in the future

book on the role of Demodex mites in Rosacea and other dermatoses. However,

we would need 3-4 months to deliver the manuscript.

Best Regards

â€

Kosta Y. Mumcuoglu, PhD

_____________________________________________

Helen Cooper

RRDi Corporate Member

Submitted an article:

THE EFFECT OF DIETARY SALT ON ROSACEA

_____________________________________________

The following MAC members are too busy and replied that they could not contribute an article:

Marianne Boes, PhD

Robert T. Brodell, MD

Sandra Creamers, MD

Robert Latkany, MD

Michelle Pelle, MD

Gerd Plewig, MD

_____________________________________________

We have yet to hear from 15 MAC members, so based on the replies so far, it will be a long project before we are finished. But I am confident that the first publication the RRDi sponsors will be important and increase respect for this non profit organization of volunteers and increase membership. Let me know if you want to be a part of this project?

Due to time constraints Dr. Clark has resigned from volunteering from the MAC. We are sorry to see her go and wish the best for Dr. Clark and an open invitation is always there for her.

MAC Members,

Please comment on this news item that was just released.

In major newspapers across the country they are saying scientists have found the cause of rosacea. For instance the Los Angeles Times, US News and World Report, the Washington Post, UCSD News and Medical News Today. The abstract is already published on PubMed.

Here is the Abstract

Increased serine protease activity and cathelicidin promotes skin inflammation in rosacea

Kenshi Yamasaki, Anna Di Nardo, Antonella Bardan, Masamoto Murakami, Takaaki Ohtake, Alvin Coda1, Robert A Dorschner1, Chrystelle Bonnart, Pascal Descargues, Alain Hovnanian, Vera B Morhenn & Richard L Gallo

Nature Medicine, 5 August 2007 | doi:10.1038/nm1616; http://www.nature.com [type in rosacea in the search box]

Acne rosacea is an inflammatory skin disease that affects 3% of the US population over 30 years of age and is characterized by erythema, papulopustules and telangiectasia1, 2, 3. The etiology of this disorder is unknown, although symptoms are exacerbated by factors that trigger innate immune responses, such as the release of cathelicidin antimicrobial peptides4. Here we show that individuals with rosacea express abnormally high levels of cathelicidin in their facial skin and that the proteolytically processed forms of cathelicidin peptides found in rosacea are different from those present in normal individuals. These cathelicidin peptides are a result of a post-translational processing abnormality associated with an increase in stratum corneum tryptic enzyme (SCTE) in the epidermis. In mice, injection of the cathelicidin peptides found in rosacea, addition of SCTE, and increasing protease activity by targeted deletion of the serine protease inhibitor gene Spink5 each increases inflammation in mouse skin. The role of cathelicidin in enabling SCTE-mediated inflammation is verified in mice with a targeted deletion of Camp, the gene encoding cathelicidin. 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.

1. Division of Dermatology, University of California, San Diego, and VA San Diego Health Care System, 3350 2. La Jolla Village Drive, San Diego, California 92161, USA.

3. Department of Dermatology, Asahikawa Medical College, Asahikawa 078-8510, Japan.

4. Department of Medicine, Asahikawa Medical College, 2-1-1-1 Midorigacka Hidashi, Asahikawa 078-8510, Japan.

5. INSERM, U563, Toulouse F-31000, France.

UniversitÈ Paul-Sabatier, Toulouse F-31000, France.

6. CHU Toulouse, Department of Genetics, Place du Dr. Baylac, Toulouse F-31000, France.

This section is for you to post whatever questions you may have to fellow corporate members about rosacea.

I have been troubled to understand what the criteria is in determining when physicians choose to use laser, IPL, LED, or other light devices to treat rosacea?

Could you help understand when laser would be appropriate, when IPL would be the choice, when LED treatment would be used, or any other light devices?

I just ran across something that was new to me, that rosacea is a condition, not a disease (like acne is a condition and acne vulgaris is the disease). The source of this new thought to me was in an article entitled, The Proposed Inflammatory Pathophysiology of Rosacea, by Medscape from WebMD. However I have seen in many articles that rosacea is a disease, such as this recent quote in an article just released, "Rosacea is a common and chronic disorder characterized by flushing, erythema, papules, pustules, and telangiectasia on the central part of the face. Because the facial skin of individuals with rosacea is particularly sensitive, irritants can trigger a worsening of the signs and symptoms of the disease," written by Laquieze, et al, .

If rosacea is considered a condition rather than a disease, what would the correct term be for the disease?

It is with sad regrets that Steve Andreesen has resigned from the board of directors. Steve spent many volunteer hours helping out with the forum and website and helped make many decisions for the RRDi. We will miss Steve who is attending college and wish the best for him. He will be missed.

The RRDi has now allowed corporate members to post personal rosacea treatment questions in the ASK THE MAC forum. We have a Forum Disclaimer which you should read that protects the health care professionals and the RRDi which you agree to when you post. Any violations of the terms and conditions of using this forum will not be tolerated and banishment as a corporate member will be expedient. Please do not violate the rules of this forum. We have a very strong Forum Disclaimer which protects liability issues with the health care professionals in the MAC and the RRDi. The rules in the disclaimer are very specific about medical advice given on this forum. You should ask your physician about your rosacea question. The answers given in this forum are general due to this liability issue. The MAC members who volunteer to answer questions here are very much aware of the liability in answering your question and will be extremely careful to not tread in areas that could question this liability.

Found this interesting information on the inflammatory theory of rosacea and would like the MAC MEMBERS to comment on whether they feel rosacea is indeed an inflammatory disease and whether this theory is more acceptable than the vascular disorder theory of rosacea? Here are the articles >

Rosacea is a Chronic Inflammatory Disease

While research has not completely ruled out a microbial component in the pathogenesis of rosacea (e.g., Demodex mite overgrowth), there is strong evidence that rosacea is primarily—if not solely—an inflammatory disease.

This view is supported by histopathologic findings that include follicular and perivascular leukocytic infiltrates1,2 and an absence of pathologic microflora.3 It is further reinforced by research demonstrating that the antibiotics effective against rosacea work by suppressing a variety of proinflammatory mediators thought to play a primary role in rosacea pathophysiology (Figure 1).4 These include tumor necrosis factor alpha (TNF-?), the interleukins IL-1 and IL-6, and the neutrophil-derived compounds nitric oxide (NO), matrix metalloproteinases (MMPs), and various reactive oxygen species (ROS).

Sequence of Events

While the evolution of the inflammatory response in rosacea has not been precisely elucidated, investigators suspect a sequence of events similar to the following:

Vasodilation of dermal capillaries, possibly mediated by histamine, prostacyclin, prostaglandin E2, nitric oxide, or other vasoactive compounds, causes initial erythema

Prolonged dilation weakens capillary walls, allowing neutrophils and proinflammatory cytokines such as TNF-?, IL-1, and IL-6 to leak into the surrounding dermis

Extravascular fluid builds up, overwhelming lymphatic vessels, and results in edema

Additional neutrophils are recruited by chemotactic factors released from inflamed dermal tissues

Activated neutrophils release degradative compounds, including matrix metalloproteinases (collagenases and gelatinases), reactive oxygen species, and nitric oxide—that exacerbate the inflammatory response and lead to tissue damage. > Source of this article

Examining Inflammation as a Common Factor in Theories of Rosacea Pathophysiology

By Dr. Joseph Bikowski

Joseph Bikowski, MD

Clinical Assistant Professor, Dermatology

Ohio State University

Columbus, Ohio

Director

Bikowski Skin Care Center

Sewickley, Pennsylvania

Rosacea is a common, chronic disorder affecting millions of patients annually. Some estimates report prevalence rates as high as 1 in every 20 Americans.1 While the signs and symptoms of rosacea have been established and documented, the exact pathophysiology of the disease has yet to be fully identified.1,2 Multiple theories have been suggested ranging from microbial causation to photodamage.2,3,4 However, no single etiologic source has been established. Without researched evidence of the etiology of rosacea, we must consider other available clues to help identify the underlying pathophysiology. The most reliable source of this information is derived from current treatment practices where it is believed that effective therapies for rosacea work by exerting anti-inflammatory effects.5,6,7 Therefore, it is necessary to examine the role of inflammation as a central causative factor of the signs and symptoms of rosacea.

The pathways of inflammation involved in rosacea have been documented to be from multiple physiologic sources. It is highly probable that these pathways work concomitantly to produce the common symptoms of rosacea such as inflammatory lesions, erythema, telangiectasias, phymatous changes, and ocular symptoms. This is supported by the fact that current therapies used to treat the disease work by interdicting multiple inflammatory pathways and yield improvement of varying degrees in each of the symptomatic areas.6,7,8, 9 Furthermore, the known anti-inflammatory properties of doxycycline (a common systemic therapy for rosacea) are closely correlated with the inflammatory mediators postulated to be responsible for the symptoms of rosacea.

Recent research has shown an increase of specific proinflammatory cytokines, including tumor necrosis factor (TNF-?) and interleukin (IL-1?), in biopsies of inflammatory lesions from acne patients.9 These cytokines trigger a chain of chemical responses in the body, including the release of certain matrix metalloproteinases (MMPs); specifically, MMP-1, -3, and -9.10,11 These MMPs are involved in collagen matrix degradation and inflammatory damage. The likely result is the development of papulopustular lesions. Owing to the similarities between these lesions in acne and rosacea, this evidence offers insight into the inflammatory nature of rosacea.

Two additional inflammatory mediators thought to incite the symptoms of rosacea are reactive oxygen species (ROS) and nitric oxide (NO). Clinical trial evidence reports that patients with severe rosacea have a reduced capacity to counter the negative effects of ROS; thus, experiencing an increased inflammatory response.11,12 This may also explain the connection between photodamage and rosacea since sun exposure is known to induce the release of ROS which subsequently activates MMPs.13 The role of NO involves vascular changes and is believed to be partially responsible for the erythema, edema, and telangiectatic symptoms of rosacea.11,13 Vasodilation plausibly results in vascular instability leading to increased vessel permeability, edema, and fixed vessels. This may worsen with increased sun exposure as an increase of NO in the keratinocytes has been linked with UVB rays.9

Substantiating each of the stated inflammatory mechanisms of pathophysiologic activity in rosacea is evidence that currently prescribed therapies do target these mechanisms. It is postulated that metronidazole and azelaic acid, both applied topically, reduce ROS and thereby decrease inflammation.6,7,15 Furthermore, doxycycline inhibits inflammation (directly and indirectly) by reducing the activity and/or expression of MMPs, TNF-? , IL-1?, NO, and ROS.8,11 These effects have been proven in anti-inflammatory doses of doxycycline which are devoid of antibiotic activity.8,16 Such activity results in improved integrity of the dermal tissue, reduced inflammation, and less vasodilation. Therapeutically, such effects appear to clinically reduce the numbers of inflammatory lesions, improve erythema, and help reduce the visibility and occurrence of telangiectasias. Hence, a comparison of available research regarding the pathophysiology of rosacea paired with the known activity of common treatments for this disease strongly point to inflammation as the central causative factor. This information is important to the development of future treatment options for rosacea as well as the appropriate selection of currently available treatments to ensure efficacious and safe therapies. > source of this article

I sent an email to Dr. Draelos to ask her if she could use her influence to get past the massive wall we have hit trying to get a donation from any of the pharmaceutical companies and here is the exchange:

From: Brady Barrows

Subject: Rosacea Research & Development Institute

Date: March 10, 2007 7:56:37 PM HST

To: Dr. Zoe Draelos

Dr. Draelos,

After reading your resumé and your connections with pharmaceutical companies I am confident that you would be very helpful in getting the RRDi some donations or grants for research.

We are committed to spending 90% of our funding with the donations we receive which is in stark contrast to what other non profit organizations spend on research. We can do this because the RRDi is made up of volunteers.

The National Rosacea Society has received from 1998 through 2005 in donations $6,200,400 of which only $561,132 was spent on rosacea research which is about 9% of the total donations. That means for every dollar donated to the NRS only 9 cents is spent on research. About 60% of the donations was spent on one private contractor, Glendale Communications Group, Inc., of Barrington, Ilinois which is owned by Sam Huff the director of the NRS.

The volunteers who founded the RRDi felt that something needs to be done about this and that is why we formed the non profit organization to do our own research so that the majority of the funds would be spent on research rather than running the organization.

We have contacted the pharmaceutical companies and have hit a huge wall of apathy. We need someone like you to get past this huge wall and help us be able to begin this process so that we can engage in some novel rosacea research that the pharmaceutical companies will be pleased with and get the respect of the medical community. Please help us with your expertise. Thanks.

Brady Barrows

______________________________________________

From: Dr. Zoe Draelos

Subject: Re: Rosacea Research & Development Institute

Date: March 11, 2007 2:25:46 PM HST

To: Brady Barrows

Dear Brady,

There is a great deal of research going on regarding rosacea. We currently have 2 studies running. These are FDA studies, however, and would only be of the type funded by industry, since the average study costs 20 million dollars. We have some smaller cosmetic related studies and they run about 100,000 dollars. This is where industry is putting its money. Because of the requirements of the government, research of this type cannot be performed in the private sector. I hope this helps you to understand better. The National Rosacea Society cannot fund this type of work either.

Best Wishes,

Zoe Diana Draelos, MD

______________________________________________

From: Brady Barrows

Subject: Re: Rosacea Research & Development Institute

Date: March 11, 2007 10:07:38 PM HST

To: Dr. Zoe Draelos

Dr. Draelos,

Thanks for your reply and if you ever hear of anything that the RRDi might be used to funnel some research through, please let me know. We do have some volunteer grant writers that need some direction and a project to pursue. The situation you describe is incredible but one would think that a pharmaceutical company might want a tax deduction and so far all have ignored our pleas for a donation.

Brady Barrows

______________________________________________ end of exchange

As you can see from Dr. Draelos comment about the possibility of getting donations from pharmaceutical companies is going to be quite a feat. However, we are in this for the long haul and with patience, perseverance, and more volunteers, we can continue to pursue industry donations for novel rosacea research.

Brady Barrows

Evan (supdwg234) 19 Jul 2006

A BIG welcome to Evan in taking the plunge and offering to help. Thank you!

We want to increase the number of physicians serving on the Medical Advisory Committee. If you can help, please contact your physician or any physician you would like to see serving on the MAC. You can view a sample email or letter at this page >

http://www.irosacea.org/sample.php

Volunteering is the spirit that drives this organization. The more MAC members the better!

I am pleased to announce that Google has accepted the RRDi in their Google Grants program which means the RRDi will receive money to have the RRDi advertised in the Google AdWords program. Our site will be advertised on millions of web sites which should drive traffic to our web site and increase membership and donations. This is the first grant program received.

Next time you see an Ads by Google you will note that the RRDi is listed near the top. Cool.

Dr. Peat asked me to post this for him:

From: raypeat@efn.org

Subject: Re: RRDi volunteer time

Date: February 16, 2007 9:37:02 AM HST

To: director@irosacea.org

My computer has trouble with PDF files, and anyway I'd rather spend my time interacting with people rather than going through the unpleasant process of reading legal documents. If security/privacy is an issue, you could post my email address in the forum section, and I'll respond to questions individually. You can post the introductory comment below.

I'm interested in the interactions of nutrition, toxins, hormones, and light with mitochondrial functions.

When mitochondrial respiration is impaired, cells produce lactate, which creates vasodilation and other features of inflammation, including neovascularization, stimulation of fibroblast growth and collagen production.

Arzneimittelforschung 1968 Dec;18(12):1525-9. On the phlogogenic properties of lactic acid in animal experiments

Wilhelmi G, Gdynia R.

Nature. 1969 Aug 2;223(5205):516-7.

Diminished responsiveness to thyroid hormone in riboflavin-deficient rats.

Rivlin RS, Wolf G.

Can J Biochem. 1971 Aug;49(8):987-9.

The in vivo effect of adrenorcorticortropin on the biosynthesis of flavin

nucleotides in rat liver and kidney.

Fazekas AG, Sandor T

Raymond Peat, Ph.D.

The RRDi MAC is large because all of the professionals in the Medical Advisory Committee [MAC] are volunteers who have agree to help the RRDi if they have the time. If some are too busy to reply to RRDi questions, whether in this forum or from the board of directors, there will be a large pool to draw from for advice from those who do have the time to reply.

There is no limit on the number of professionals on the MAC. If you have a physician or health care professional that you think would be a good addition to the MAC, let us know. The RRDi would need the contact information, particularly the email address of the professional. To be approved, the RRDi will need a photo, CV, and why this professional would enhance the MAC. We don't need professionals who have no interest in rosacea.

Volunteers can on their own, contact professionals to see if any would be interested in volunteering on the RRDi MAC. However, the professional you want would need to make direct contact with any member of the RRDi Board of Directors to be nominated, since the board makes the final decision on who serves on the MAC. You may make a suggestion or nomination in this thread, but it takes time, energy, and a volunteer spirit to contact the professional and sometimes it is like a detective hunt to get the contact information of the professional being considered. If you could volunteer to obtain the contact information, whether it is the email address, web site, or mailing address of the professional that would really be showing the volunteer spirit. If more members would volunteer in any way they can to help the RRDi reach its mission, this would certainly be appreciated.

I received this email from Y. Aquino, NHIC who said they would review our web site to see if we are worthy of being mentioned in their database. I found them on a Google search and noticed the RRDi wasn't mentioned in the the database and filled out the online form to request the RRDi be included. We sure could use volunteers who would simply do Google searches and request that the RRDi be included in similar databases and web sites. The RRDi will exchange reciprocal links with non profit organizations with similiar interests. Reciprocal links would be reviewed by the board of directors for inclusion on our links page. Here is the email I received from the NHIC:

From: info@nhic.org

Subject: RE: ROSACEA

Date: February 8, 2007 7:16:05 AM HST

To: director@irosacea.org

Our site has an advisory committee and a formal review process. We will be happy to visit your site and evaluate it for inclusion in our database. For more information on our selection process, please visit -- http://www.healthfinder.gov/aboutus/selection.asp.

We appreciate your interest in healthfinder®.

Sincerely,

Y. Aquino

Information Specialist

healthfinder®/NHIC

P.O. Box 1133

Washington, DC 20013-1133

healthfinder@nhic.org/info@nhic.org

301-565-4167

healthfinder® and NHIC are services of the Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services.

Dr. Cordain asked me to post this for him:

From: Dr. Loren Cordain

Subject: RE: RRDi Forum Help Page

Date: February 1, 2007 10:47:20 AM HST

Hi Brady,

The clue to the role that diet may play in the etiology of rosacea comes from the observation that pharmaceutical eradication of the bacteria, Helicobacter pylori, improves or ameliorates symptoms in rosacea patients (1-3). H. pylori is the bacteria that causes gastric and duodenal ulcers. Although the physiological basis for the curative effect of H. pylori eradication is unknown, we believe that a mechanism in the human gut, the epidermal growth factor receptor (EGF-R) likely plays a crucial role in the etiology of rosacea. The EGF-R is unusual in that it is expressed luminally in the gut (4,5). The primary role of the luminally expressed gut EGF-R is to provide a healing mechanism for damaged epithelial cells in the gut. One of the endogenous ligands for the EGF-R is EGF which is found in saliva and when swallowed promotes healing in damaged epithelial cells lining the gut (5). Additionally, salivary EGF may also finds its way into circulation through this pathway based upon the observation that surgical removal of the salivary and parotid glands in experimental animals reduces blood concentrations of EGF.

Infection of the GI tract with H. pylori leading to ulcers causes an upregulation (increase in density) of the EGF-R (6). Hence any substance in the gut capable of binding the EGF-R will have increased access to the peripheral circulation. We believe the reason why eradication of H. pylori reduces rosacea symptoms is because it downregulates (or reduces the numbers of) the EGF-R. Hence gut borne substances which would have gained entry to the circulation through the EGF-R and which may cause rosacea are partially denied access into the circulation.

In support of the notion that the EGF-R is central to the development of rosacea is the observation that EGF-R blocking pharmaceuticals elicit erythematous papules and follicular pustules (7-9) that likely occur because of an overexpression of the EGF-R in keratinocytes (8).

In regard to diet, the following substances also bind the gut EGF-R and gain access to circulation:

1. Wheat germ agglutinin (WGA) a dietary lectin which is found in both whole and refined wheat products (10).

2. Peanut agglutinin (PNA) a dietary lectin which is found in peanuts (11).

3. Tomato lectin (TL), a dietary lectin which is found in tomatoes (12)

4. Phytohemmagglutinin (PHA) a dietary lectin which is found in kidney beans and all other Phaseolus vugaris bean varieties (13, 14)

5. Soybean agglutinin (SBA) a dietary lectin which is found in all soybeans and soy products, whose specifity is to one of the sugars in the EGF-R (15)

6. Betacellulin (BTC) a hormone found in milk and cheese which is a natural ligand for the EGF (16, 17).

7. Egg white lysozyme, a lectin found in the whites of eggs (18)

Hence, once these dietary ligands for the EGF-R bind the gut EGF-R, some eventually escape destruction in gut epithelial cell lysozomes and reach circulation intact where they can bind the keratinocyte EGF-R and cause increased proliferation and inflammation (19). Dietary factors which can bind the EGF-R should be strongly implicated in the etiology of rosacea. Randomized controlled clinical trials will be needed needed to test the efficacy of elimination diets using known dietary ligands for the EGF-R.

REFERENCES:

1. Boixeda de Miquel D, Vazquez Romero M, et al. Effect of Helicobacter pylori eradication therapy in rosacea patients. Rev Esp Enferm Dig. 2006 Jul;98(7):501- 509.

2. Utas S, Ozbakir O, Turasan A, Utas C. Helicobacter pylori eradication treatment reduces the severity of rosacea.J Am Acad Dermatol. 1999 Mar;40(3):433-5.

3. Diaz C, O'Callaghan CJ, Khan A, Ilchyshyn A. Rosacea: a cutaneous marker of Helicobacter pylori infection? Results of a pilot study. Acta Derm Venereol. 2003;83(4):282-6.

4. Hormi K, Lehy T. Developmental expression of transforming growth factor-alpha and epidermal growth factor receptor proteins in the human pancreas and digestive tract. Cell Tissue Res. 1994 Dec;278(3):439-50.

5. Montaner B, Perez-Tomas R. Epidermal growth factor receptor (EGF-R) localization in the apical membrane of the enterocytes of rat duodenum. Cell Biol Int. 1999;23(7):475-9.

6. Coyle WJ, Sedlack RE, Nemec R, Peterson R, Duntemann T, Murphy M, Lawson JM Eradication of Helicobacter pylori normalizes elevated mucosal levels of epidermal growth factor and its receptor. Am J Gastroenterol. 1999 Oct;94(10):2885-9

7. Dewitt CA, Siroy AE, Stone SP. Acneiform eruptions associated with epidermal growth factor receptor-targeted chemotherapy. J Am Acad Dermatol. 2006 Dec 11; [Epub ahead of print]

8. Hannoud S, Rixe O, Bloch J, Le Pelletier F, Lebrun-Vignes B, Doarika A, Khayat D, Chosidow O. [skin signs associated with epidermal growth factor inhibitors] Ann Dermatol Venereol. 2006 Mar;133(3):239-42.

9. Molinari E, De Quatrebarbes J, Andre T, Aractingi S. Cetuximab-induced acne.Dermatology. 2005;211(4):330-3.

10. Gabor F, Bogner E, Weissenboeck A, Wirth M. The lectin-cell interaction and its implications to intestinal lectin-mediated drug delivery. Adv Drug Deliv Rev. 2004 Mar 3;56(4):459-80.

11. Wang Q, Yu LG, Campbell BJ, Milton JD, Rhodes JM. Identification of intact peanut lectin in peripheral venous blood. Lancet. 1998 Dec 5;352(9143):1831-2.

12. Kilpatrick DC, Pusztai A, Grant G, Graham C, Ewen SW. Tomato lectin resists digestion in the mammalian alimentary canal and binds to intestinal villi without deleterious effects. FEBS Lett. 1985 Jun 17;185(2):299-305.

13. Rebbaa A, Yamamoto H, Moskal JR, Bremer EG Binding of erythroagglutinating phytohemagglutinin lectin from Phaseolus vulgaris to the epidermal growth factor receptor inhibits receptor function in the human glioma cell line, U373 MG. J Neurochem. 1996 Dec;67(6):2265-72.

14. Pusztai A, Greer F, Grant G. Specific uptake of dietary lectins into the systemic circulation of rats. Biochem Soc Trans 1989;17:481-2.

15. Rao VS, Lam K, Qasba PK. Three dimensional structure of the soybean agglutinin Gal/GalNAc complexes by homology modeling. J Biomol Struct Dyn. 1998 Apr;15(5):853-60.

16. Bastian SE, Dunbar AJ, Priebe IK, Owens PC, Goddard C. Measurement of betacellulin levels in bovine serum, colostrum and milk. J Endocrinol. 2001 Jan;168(1):203-12

17. Dunbar AJ, Priebe IK, Belford DA, Goddard C. Identification of betacellulin as a major peptide growth factor in milk: purification, characterization and molecular cloning of bovine betacellulin. Biochem J. 1999 Dec 15;344 Pt 3:713-21.

18. Hashida S, Ishikawa E, Nakamichi N, Sekino H. Concentration of egg white lysozyme in the serum of healthy subjects after oral administration.Clin Exp Pharmacol Physiol. 2002 Jan-Feb;29(1-2):79-83

19. Cordain L, Toohey L, Smith MJ, Hickey MS. Modulation of immune function by dietary lectins in rheumatoid arthritis. Br J Nutr. 2000 Mar;83(3):207-17.

Loren Cordain, Ph.D., Professor
Department of Health and Exercise Science
Colorado State University

"Rosacea-like papulopustular eruptions (rash) are considered the most frequent toxicities associated with the use of inhibitors of the epidermal growth factor receptor (EGFR). Recently, evidence has been accumulating of infectious complications in patients suffering from these adverse effects." 

Dermatology 2011;222:144–147
Density of Demodex folliculorum in patients receiving epidermal growth factor receptor inhibitors
Peter A Gerber, Gabriela Kukova, Bettina A Buhren, Bernhard Homey

Reply to this Topic

There is a reply to this topic button somewhere on the device you are reading this post. If you never heard about this topic and you learned about it here first, wouldn't it be a gracious act on your part to show your appreciation for this topic by registering with just your email address and show your appreciation with a post?  And if registering is too much to ask, could you post your appreciation for this topic by finding the START NEW TOPIC button in our guest forum where you don't have to register?  We know how many have viewed this topic because our forum software shows the number of views. However, most rosaceans don't engage or show their appreciation for our website and the RRDi would simply ask that you show your appreciation, please, simply by a post.  

Et Cetera

More on diet triggers

Do you have a gut feeling about rosacea?

Please Note: Because a couple of the MAC members are having problems accessing the forum due to our tight security, I asked the following question to all the MAC members by email and the responses are posted below. We are working on how to make the forum a bit more user friendly or understandable to not only the MAC members but for everyone. I have asked a number of volunteers to help with this project and will announce the results in the future. A few of the MAC members haven't joined the forum, so hopefully they will reply to the question below, which I have always wondered about. Here is the intial question to the MAC:

Question for the RRDi Medical Advisory Committee:

Could you comment on why rosacea demodicosis has never been considered a variant or subtype of rosacea, yet continues to be researched and mentioned in many clinical studies and papers?

Could rosacea demodicosis be considered a variant of rosacea or could it be considered a subtype along with the four other subtypes (ETR, Papulopustular, Phymatous, Ocular)?

Brady Barrows

The responses:

From: Dr. Brodell

Subject: Re: Question for the RRDi Medical Advisory Committee

Date: January 25, 2007 2:23:42 AM HST

To: BB

The main subtypes of rosacea have been named because of their clinical features, not the underlying mechanism which produces them. This is because these mechanisms remain controversial. With regard to demodex, it is clear that demodex mites are found in increasing numbers in patients with rosacea, BUT are these present because rosacea produces fertile ground for their growth or are they the root cause of the rosacea. This has not been clearly determined.

Dr. Bob Brodell

____________________________________________________

From: BB

Subject: Re: Question for the RRDi Medical Advisory Committee

Date: January 25, 2007 6:18:03 PM HST

To: Dr. Brodell

Dr. Brodell,

Please bear with me since I obviously don't understand this subject since I am asking the question.

My understanding is that these are the subtypes of rosacea:

ETR, Papulopustular, Phymatous, Ocular, Neuropathic Rosacea, and Glandular Rosacea.

I am not discussing the the underlying mechanism being demodex. If the subtypes are classified due to their clinical features, my understanding is that a simple microscopic test can reveal if the number of demodex mites are above average in a rosacea patient. That would present a clinical feature that can be observed and wondered why it isn't considered a subtype?

I don't understand how they classify a variant of rosacea. My understanding is that the variants of rosacea are:

Granulomatous Rosacea, Rosacea Fulminans, Steroid-Induced Rosacea, Perioral Dermatitis, Persistent edema of rosacea, Gram-Negative Rosacea, Halogen Rosacea, Rosacea Conglobata, and Rosacea Inversa.

What is the difference between classifying rosacea as a subtype or variant? If is the clinical features with subtypes, what is the criteria for classifying rosacea as a variant?

And my original question still is why isn't Rosacea Demodicosis not even mentioned when the clinical studies are revealing that demodex plays a factor in rosacea. I can list for you a long list of clinical studies.

Brady Barrows

____________________________________________________

From: Dr. Brodell

Subject: Re: Question for the RRDi Medical Advisory Committee

Date: January 26, 2007 1:13:58 AM HST

To: BB

The key issue is whether demodex inhabit abnormal skin that is already "rosacea"....like putting a wet piece of bread on a table and coming back 3 days later to see a variety of molds growing on the bread...or whether demodex is a primary pathophysiologic factor in causing rosacea. In fact, if the latter is true,and if the cause of a particular case of rosacea is either proprionobacterium acnes, demodex, pityrosporon, etc....then the entire schema of rosacea types needs to be revamped so we can make a diagnosis that would be linked to the most appropriate treatment. Wouldn't it be great if we knew that rosacea with many pustules is the type associated with demodex....and this type responds most effectively to topical permethrin! Then, I would call this type the pustular-demodex variant and voila...progress. The problem is that we just do not have the science to back up this type of schema.

Dr. BOB

__________________________________________________

From: Dr. Jones

Subject: RE: Question for the RRDi Medical Advisory Committee

Date: January 25, 2007 6:02:51 AM HST

To: BB

My understanding is that the four current subtypes are based on purely clinical features. Demodex-associated rosacea probably can’t be diagnosed on clinical features alone and at this point would require identification of the mite through some sort of lab test.

-Dave

From: BB

Subject: Re: Question for the RRDi Medical Advisory Committee

Date: January 25, 2007 6:20:33 PM HST

To: Dr. Jones

Dr. Jones,

Please bear with me since I obviously don't understand this subject since I am asking the question.

My understanding is that these are the subtypes of rosacea:

ETR, Papulopustular, Phymatous, Ocular, Neuropathic Rosacea, and Glandular Rosacea.

I am not discussing the the underlying mechanism being demodex. If the subtypes are classified due to their clinical features, my understanding is that a simple microscopic test can reveal if the number of demodex mites are above average in a rosacea patient. That would present a clinical feature that can be observed and wondered why it isn't considered a subtype?

I don't understand how they classify a variant of rosacea. My understanding is that the variants of rosacea are:

Granulomatous Rosacea, Rosacea Fulminans, Steroid-Induced Rosacea, Perioral Dermatitis, Persistent edema of rosacea, Gram-Negative Rosacea, Halogen Rosacea, Rosacea Conglobata, and Rosacea Inversa.

What is the difference between classifying rosacea as a subtype or variant? If is the clinical features with subtypes, what is the criteria for classifying rosacea as a variant?

And my original question still is why isn't Rosacea Demodicosis not even mentioned when the clinical studies are revealing that demodex plays a factor in rosacea. I can list for you a long list of clinical studies.

And why can't 'a diagnosis be determined on clinical features alone' when a simple microscopic test reveals the mite density?

Brady Barrows

____________________________________________________

From: Dr. Jones

Subject: RE: Question for the RRDi Medical Advisory Committee

Date: January 26, 2007 8:58:19 AM HST

To: BB

Seems largely arbitrary to me too, but there´s no doubt that it has use in talking about the disease. Classification issues frustrate everyone, and the reason it´s so difficult in rosacea is that the pathogenesis is so poorly understood. As I see it, subtypes usually refer to things that would be generally recognized as central components of the main disease spectrum, whereas variants refer to types that are less common and have some particular feature that makes them stand out noticeably from the main spectrum of disease. In rosacea, classification is based on clinical criteria, because that´s about all we have to go on. I suppose you´re right that there´s no reason to exclude demodex counts as a clinical criterion and then if there´s an uncommon subgroup of patients with really high counts as a defining feature you could call it a variant. It´ll be tough to get clinicians to spend time doing the test, though.

I think the biggest question is still how does demodex contribute to the pathophysiology, and can that understanding help us treat the disease.

David A. Jones, MD, PhD

____________________________________________________

From: Dr. E.J.van_Zuuren

Subject: RE: Question for the RRDi Medical Advisory Committee

Date: January 25, 2007 6:48:11 AM HST

To: BB

Hi Brady,

I keep on having difficulties to surf through the RRDi site,

I cannot find this MAC question

However I will answer it now. I am not an rosacea expert, I don't see rosacea patients, only allergy patients. I only performed the systematic review on treatments for rosacea. The questions on the several subtypes should be answered by the real rosacea experts. I think you can make many more subtypes or variants, but the idea of the classification was to categorize the subtypes for those who do research. The more subtypes you make to more difficult it will become I think

Best wishes Esther

____________________________________________________

From: Dr. Latkany

Subject: Re: Question for the RRDi Medical Advisory Committee

Date: January 25, 2007 1:48:21 PM HST

To: BB

Sorry but I have no comment on this. I just lump all of them into one category because from an eye standpoint they all act the same and are treated the same way.

RL

____________________________________________________

From: Dr. Draelos

Subject: Re: Question for the RRDi Medical Advisory Committee

Date: January 25, 2007 2:15:36 PM HST

To: BB

Dear Brady,

Thank you for your question. Not everyone agrees that Demodex is operative in the pathogenesis of rosacea. Rosacea is probably a collection of many different diseases that are lumped together inappropriately.

Best Wishes,

Zoe Diana Draelos, MD

____________________________________________________

From: BB

Subject: Re: Question for the RRDi Medical Advisory Committee

Date: January 25, 2007 6:23:02 PM HST

To: Dr. Draelos

Dr. Draelos,

I can really appreciate your comment that rosacea is 'probably a collection of many different diseases lumped together inappropriately.'

Please bear with me since I obviously don't understand this subject since I am asking the question.

My understanding is that these are the subtypes of rosacea:

ETR, Papulopustular, Phymatous, Ocular, Neuropathic Rosacea, and Glandular Rosacea.

I am not discussing the the underlying mechanism being demodex. If the subtypes are classified due to their clinical features, my understanding is that a simple microscopic test can reveal if the number of demodex mites are above average in a rosacea patient. That would present a clinical feature that can be observed and wondered why it isn't considered a subtype?

I don't understand how they classify a variant of rosacea. My understanding is that the variants of rosacea are:

Granulomatous Rosacea, Rosacea Fulminans, Steroid-Induced Rosacea, Perioral Dermatitis, Persistent edema of rosacea, Gram-Negative Rosacea, Halogen Rosacea, Rosacea Conglobata, and Rosacea Inversa.

What is the difference between classifying rosacea as a subtype or variant? If is the clinical features with subtypes, what is the criteria for classifying rosacea as a variant?

And my original question still is why isn't Rosacea Demodicosis not even mentioned when the clinical studies are revealing that demodex plays a factor in rosacea. I can list for you a long list of clinical studies.

I am not discussing the pathogenesis of rosacea being demodex. I understand that the cause of rosacea is unknown.

Brady Barrows

____________________________________________________

From: Dr. Draelos

Subject: Re: Question for the RRDi Medical Advisory Committee

Date: January 26, 2007 3:06:08 AM HST

To: BB

Dear Brady,

Rosacea was classified by a panel who reached a consensus on the groups you mentioned. These are groups based on appearance of the face. They are considered stages of rosacea as untreated rosacea will progress from one group to another in the order that you listed. Demodex are not visible to the human eye. Thus, this factor was not selected for the grouping.

Best Wishes,

Zoe Diana Draelos, MD

____________________________________________________

From: BB

Subject: Re: Question for the RRDi Medical Advisory Committee

Date: January 26, 2007 7:26:37 AM HST

To: Dr. Draelos

Dr. Draelos,

Now that explains it. You are the only doctor who has explained this to me. It is odd to me that the variants can be differentiated by the eye.

Since more and more clinical studies are finding demodex mites in a significant number of rosacea patients, rosacea demodicosis should be considered either a subtype or variant some day in the future. I thought it would be something that the RRDi could be a part of.

I have read how many research papers you have written and how many committees your serve on. If you could use your influence to obtain a grant that the RRDi could sponsor, our three volunteer professional grant writers could write it up, the MAC could approve it, and the RRDi could then have a research paper published. We have sent letters to the pharmaceutical companies for either a donation or grant and can't get passed a massive wall of no response.

I know I have probably used up your 15 minutes of volunteer time this month already, but keep us in mind if you are in the right place and the right time and remember irosacea.org to someone who has the purse strings to fund a study.

Brady Barrows

____________________________________________________

From: Dr. Joel T. Bamford

Date: January 29, 2007

To: Brady Barrows

 

Demodex is part of the normal flora of facial hair follicles. Thus far, there is not proof (scientific) that it causes or makes rosacea worse.

A very nice study at the NRS research forum two (?) years ago, explained how tetracyclne could supress the bacteria whiich live in demodex, suggesting how TCN 'might' work if it worked by affecting demodex. The study did not show it was the cause of rosacea!

But tcn also works to block a variety of factors in inflammation process.

Dr. Bamford

_____________________________________________________

From: Gerg Plewig, M.D.

Subject: Demodicosis

Date: February 14, 2007 7:55:58 AM HST

To: BB

Dear Brady

Demodicosis is a disease sui generis. Demodicosis in animals (mange) is sometimes a serious disease.

Demodex-folliculorum-mites infest the infundibula of sebaceous follicles, rarely those of vellus hair follicles. They are either innocent bystanders or cause folliculitis or abscesses.

Rosacea patients usually have a high degree of demodex-folliculorum-mites in their facial follicles, thus aggravating a pre-existing rosacea (analogous to steroid rosacea).

Or a demodicosis can clinically mimick rosacea sui generis.

Best regards

Gerd Plewig
_________________________________________________________

Question for the MAC:

I have read all the replies and want to understand something. Dr. Plewig above says that demodicosis is a disease 'sui generis' which according to my understanding is a skin disease altogether different from rosacea, but Dr. Plewig adds is "analogous to steroid rosacea." My question is this. The NRS classifies STEROID INDUCED acneiform eruption as a rosacea variant. Wouldn't it be logical to say that since Steroid Induced rosacea is a variant and demodicosis is analogous to steroid rosacea that demodicosis could also be listed as a variant? Here is the list of variants of rosacea that I have found in research papers:

1. Granulomatous Rosacea

2. Rosacea Fulminans

3. Steroid-induced acneiform eruption

4. Perioral dermatitis

5. Persistent edema of rosacea

6. Gram-negative Rosacea

7. Halogen Rosacea

8. Rosacea Conglobata

9. Rosacea Inversa

10. Lymphedema (Morbihan's disease)

11. Gnatophyma

12. Metophyma

13. Motophyma

14. Blepharophyma

Since Steroid Induced rosacea aggravates rosacea, wouldn't demodicosis be in the same group as the above variants of rosacea? Why exclude it? Since Dr. Draelos says above that rosacea is 'probably a collection of many different diseases lumped together inappropriately,' it seems that classifying rosacea into variants would at least help physicians to rule out demodicosis when examaning patients and diagnosing the skin condition.

Another question is about variants. Since subtypes are diagnosed by the eye and a history of the patient, (according to Dr. Draelos) how does a physician diagnose a rosacea variant? Is this done simply by the eye and a history too?

Brady Barrows

____________________________________________________

From: Gerd Plewig, M.D.

Subject: AW: question

Date: March 2, 2007 5:05:02 AM HST

To: BB

Dear Brady,

Concerning your questiones, demodicosis can be a disease by itself and thus being independent of rosacea. Or demodex mites heavily colonize pre-existing rosacea and thus lead to demodectic rosacea ( rosaceiform dermatosis). This is a rather complicated issue. Rosacea is usually diagnosed by inspection the eye. Laboratory tests are rarely needed, for instance in gram-negative rosacea, where one needs bacteriology.

The same is true for demodectic rosacea, where one has to demonstrate the mites in great numbers.

Best regards,

Gerd Plewig, M.D.
_________________________________________________________________________

So far, this is all the replies, and if I get anymore I will post them here for your viewing.

_________________________________________________________________________

Just wanted you to know that we have made this forum so private and the security so tight that MAC members are frustrated in trying to get into the forum and post and find this process tedious and too difficult. 

However, this forum is private to protect primarily our MAC members who have graciously volunteered their time and energy to assist the RRDi. We cannot allow under any circumstances spammers, hackers, or any rude remarks made about our MAC volunteers, or for that matter, any member of the RRDi. 

We have invested in the Invision Power Board software and want to utilize its potential and at the same time make this process of posting on the private forum for members easy for the MAC professionals and all our members.

The problems have been that the MAC professionals forget their user name and password (as well as other members do this same thing). We can easily find anyone's user name if you contact us providing the email address, first and last name of the account you registered and assist you in logging into your account. 

We are currently using IPS Version 4 and you can check out Forum Help for assistance on using the latest state of the art member forum software.