A Rosacean Commentary

Ok, so I'm tooting my own horn here but I had a letter printed in December's issue of DT.

I mentioned our on line communities so I thought you might be interested. They edited it a good bit (I had good spew had on Metrogel that didn't make the cut) but it's probably just as well.

Here it is....

In his Guest Commentary "Managing rosacea; practitioners discuss trends" (September 2006), Dr. William Baum presents his findings after moderating advisory panels across the country consisting of specialists talking about the many facets of rosacea. As a long-term sufferer of this disease, I have to say the article was quite disappointing as the discussions on trigger factors, patient compliance and the "new frontiers" of topical treatments was just a rehash of the same old stuff we've been hearing for years and offered no new insights.

No offense to the good doctor. Rosacea is often severely misunderstood and the gap between what the medical community thinks about it and the reality of a sufferer seems to grow wider every day. Talking about trigger factors is all well and good but it would be helpful if it was better understood what someone with rosacea has to go through on a daily basis to avoid them. No sunlight, hot water, cold water, warm rooms, cold rooms, wind, stress, physical exertion, spicy foods, alcohol. To remain trigger-free would mean sitting in a dark room all day staying perfectly still. No TV or computer because the glare could cause a flare, no phones because holding the receiver next to your face makes you flush, in fact even just talking does. Absolutely no crying in self pity because you'll be beet red for the rest of the day.

Moving on to poor patient compliance, excuse me if I don't empathize with your theory that I am at fault for the progression of my disease. As discussed above, trigger avoidance is a near impossibility and the topicals commonly prescribed just cannot be tolerated by many rosaceans.

Plus, some doctors are very guilty of pushing bad products that are conveniently sold in their office and over-promising results that desperate patients cling to. I guess the frustrating part is (that) with an estimated 40 million people suffering from this disease, there have been virtually no breakthroughs in new meds or therapies to effectively treat it.

Even the lasers that are out there are marketed for other things like photodamage and wrinkles. Why hasn't a laser been made specifically for rosacea? Do these companies not understand the gold mine that is waiting for them if an effective anti-flushing treatment is found? I know there are many good doctors who understand the complexity of this disease and the suffering it brings to patients. But there are also too many sufferers who are left out in the cold (oops, another trigger) because what has become the accepted form of treatment has done squat for them and they suffer in silence.

If you'd like to take a peek in to the real work of rosacea, please check out the two most active rosacea sites on the Internet at:
http://forum.rosaceagroup.org/
http://health.groups.yahoo.com/group/rosacea-support/messages/

Dr. Baum, I do not mean this letter to be a slam on your research because you seem like an intelligent man who means well, but I challenge you and your colleagues to really push the envelope towards beating this disease! We need better treatments (specifically for flushing and redness) and look at other anti-inflammatories (than the ones) that are currently out there. Help get the word out that rosacea is, by far, not anywhere near being controlled, and new therapies are desperately needed. Most of all though, just listen to your patients.

Tricia Butler
San Diego, Calif.

rosacea-like demodicidosis

Earlier this year Brady Barrows proposed a sixth subtype for rosacea: Rosacea Demodicidosis thinking that he was the first one to come up with this subtype, but apparently this has been known for some time. In doing a Google search it has been found that this came up as far back as 1932 according to an article published in California Medicine in 1963 by Samuel Ayres, Jr., MD in Los Angeles.

Here is a small part of the article:

As early as 1932 Ayres and Anderson called attention to a type of rosacea which they felt was caused in large part by extraordinarily heavy infestation by the mite, Demodex folliculorum, and it was pointed out that the demodex type of rosacea was a further development or complication of an entity that had been described and named by the present author two years previously under the title "Pityriasis Folliculorum (Demodex) ."l Since that time a number of publications have appeared on the subject as well as an exhibit at the thirteenth annual meeting of the American Academy of Dermatology and Syphilology in 1954. The most recent publication concerning the pathogenic role of Demodex in the production of pityriasis folliculorum (Demodex) and acne rosacea was Ayres and Ayres' summary of 30 years' experience with these two commonly unrecognized entities. Both conditions were referred to as demodicidosis. Inasmuch as the authors' attempts to describe and segregate a particular type of acne rosacea as being caused wholly or in large part by Demodex has led to confusion and to the erroneous statement that the authors have claimed that all cases of rosacea are caused by Demodex, it was felt that a new term should be coined and that rosacea of the Demodex type should henceforth be referred to as "rosacea-like demodicidosis."

source of article in pdf format > http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1575759&blobtype=pdf

html format > http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1575759

Why Rosacea Flares At the Same Time Each Day

Clock rosacea or systemic flushing- the body does operate on a clock! Universally, hospital physicians have known for years that the lowest body temperature of the 24 hour day is usually around 3:00 to 4:00 A.M. while the highest temperature of the day is generally 7:00 to 8:00 P.M. The average rosacea sufferer does not have hospital waking and sleeping hours, therefore their temperature lows and highs may vary 3 to 5 hours each way. A high temperature for some may be as early as 3:00 P.M.
Flushing usually occurs when the body becomes fatigued and/or stressed which stimulates the sympathetic nervous system. The key to this is the autonomic nervous system (more specifically, the sympathetic postganglionic efferent nerves). Any activation of these nerves causes vasoconstriction of "body blood vessels" -- except in the "facial blush/flush areas" where it induces potent vasodilatation or flushing with the resulting "rosacea red face" therefore, the rosacea suffers desires treatment.
A typical rosacea sufferer would flush in the fifth grade even if the answer was known when the teacher asked a question, and obviously the flushing would be noticed by the other kids. Again the sympathetic nervous system.
Stress stimulates the sympathetic nervous system.
Lack of sleep stimulates the sympathetic nervous system with a minimum of 8 hours being needed.
Anxiety at work or home (fight or flight) stimulates the sympathetic nervous system.
Increase in internal body temperature stimulates the sympathetic nervous system when "acid drinks, foods, and cigarettes" are consumed, whereas obviously a decrease in body temperature and facial skin heat results when the the parasympathetic system calms the body and brain over a period of time such as at night when sleeping. By consuming the alkaline foods and drinks, the parasympathetic nervous system can very quickly take control of the body and brain stress.
The parasympathetic nervous system to 'activate as quickly as possible for the rosacea patients who tend to have one or more of the following:
Genetically weak blood vessels.
Damaged blood vessels from years of sun.
Damaged support system for blood vessels (collagen-elastic of skin) and a damaged immune system.
Increased number of blood vessels to years of inappropriate skin care and rosacea treatments.