Long-suffering rosacea patient asks, 'Doctors, please listen to your patients'

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.

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:// http://forum.rosaceagroup.org/

http:// 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.