Advocacy & Education: How one Person Took Her Story to the Professionals

Frequently in conversations with people suffering from one of the variouspemphigaldiseases, one is taken back by how common it is to hear that it took months to be diagnosedand even then, most doctors and dentists only had a text-book acquaintance with the vagaries of this disease and the variety of possible treatments. It was clear to me that because this disease does not present often, most doctors are wary of treating it and therefore it is often misdiagnosed. Those doctors not familiar with pemphigus and pemphigoid seem to worry about the sometimes pernicious effects of the drugs that are required and are neither clear about how to manage them, nor do they understand the ways in which the trajectory of this disease manifests itself.

I think this is especially true of the dental community. And of course, what is frustrating about this, is that dentists are the most likely to be the first to see a patient who has these conditions. What often follows is misdiagnosis and unnecessary and sometimes harmful treatments. Even when they have practiced due diligence and correctly diagnosed the condition, they are often reluctant to prescribe Prednisone or to refer their patient to a dermatologist or another doctor.

With that as background, it seemed important to begin to find ways to mitigate this mystery. Since medical and dental practices are now often done in offices or centers with multiple medical personnel, it was a clear and obvious target. One that should be exploited.

I was invited to speak with the dental group at Blackstone Valley Community Health Care in Pawtucket, Rhode Island, which is a large facility catering to patients who are either without health care or are charged on a sliding scale. There is a full complement of dentists, oral surgeons, and dental hygienists there and it was a perfect setting to begin this kind of information dissemination.

I was able to use a PowerPoint® presentation, prepared by Dr. Dave Sirois and I also put together a packet of information that I could hand out. It contained an IPPF Quarterly (newsletter), the IPPF Informational Brochure, protocols for treatment (based on a survey of specialists in the field), and a list of drugs used in association with pemphigus and pemphigoid.

This was a lunchtime (or brownbag) discussion that was casual and allowed for an opengive and take.There were about 10 professionals present. I structured my talk to be no more than 20 minutes leaving the rest of the time open for discussion and questions. The whole presentation lasted about one hour. The points I covered were:
1. What the IPPF is and does, and what my role in the organization.
2. Thebig picture viewof the various types of pemphigal disorders (how and where they present, what they look like, how they feel, and what treatments/drugs are generally used).
3. Statistical demographics of the disease.

One thing that I felt I needed to emphasize was the importance of performing a biopsy when there is doubt about diagnosis. I talked about doing a proper biopsy and following that up with an equally important tool: the ELISA blood test.

I lightly touched on the treatment protocols now available and the real need to follow that patient, or have them followed, medically due to side effects.
It was after all of this that I gave a personal synopsis of my own history, and interestingly enough this is what they were most anxious to hear. It was as if I was a concrete representation of what the discussion was all about, and it helped to emphasize the important role dentists and hygienists can and must play in early detection and proper treatment and referral. The positive outcome of being in remisson also set, I think, the proper notion, that remission was achievable.

The question-and-answer period was lively and I felt an impression had been made. Now their curiosity and interest had been jump started, I felt positive that this education and awareness process should be done all the time.

My next step is to find other medical institutes I can present to and I encourage each and every one of you to consider giving your ownawareness seminarat a local clinic, school, or hospital. It really is easy to doand the benefits are worth it!

Each health center is typically run by at least one or more medical administrators. They can be contacted and urged to set up these casual seminars. I would emphasize to them that not only the staff physicians, but the nurses, practitioners, and lab technicians all canand shouldparticipate. A free lunch is probably a good inducement as these professionals are busy most of the day and a break with lunch is a good way to draw them in. Talk to the IPPF offices about ways these organizations can support your project.

I was encouraged by my reception and the feedback I got; I had been givenrave reviews.That meant a lot to methey had listenedand more importanly, now this once-abstract disease had become just that much more real.

Oh, and in case you were wondering, lunch was very tasty!

Publié dans Question 62 - Automne 2010
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