Oral lichen planus group enhances webinars, accepts donations
These days, the webinars reach more individuals than ever via updated technology, the Citrix GoToWebinar platform. Webinars are accessed through a newly launched website, www.iolpdallas.org, which features news and information about oral lichen planus and the support group as well as webinar information. Site visitors are able to sign up to participate in upcoming webinar discussions and access recordings of previous discussions.
“We are able to chat vocally and live with the guests and hosts, and up to 1,000 people can listen via the web, says Art Upton, website administrator in communications & institutional advancement. “They also can enter their questions for the presenters to address during the session.”
Guest speakers often are invited to host the webinars; these include national and international educators, practitioners and researchers with expertise in oral lichen planus. The hosts of each webinar often continue to provide follow-up material and answers to questions after the session as well.
“We encourage questions from patients and practitioners as well as comments that may improve our functioning in the treatment and dissemination of information to our patients,” Burkhart says. “The new format for chat sessions allows easy access by participants to receive more complete answers to their questions during or, if needed, after the sessions. Plus, they can to listen to the recordings of the most recent chat sessions and all previous sessions at their leisure.”
Oral lichen planus occurs in all parts of the world. Approximately 2 percent of the general population suffers from the disease, which is an uncomfortable and chronic condition characterized by lesions that form in the mouth and skin. It is not unusual for OLP sufferers to know no one else with the disease.
According to Burkhart, OLP represents a substantial number of patients seen in TAMHSC-BCD’s Stomatology Center. Because it is not common, many individuals in the United States and around the world do not have access to a health professional with particular knowledge regarding OLP. Consequently, these individuals have questions and concerns regarding the disease as well as their diagnosis and treatment.
“They often feel very isolated psychologically and want to know more about their disease and what they can do to promote their own health. As with any chronic disease state that is rare, the patient often does not know anyone else who has oral lichen planus,” she says. “Emotional support for any disease state is very important in its control and management. Our support group and these webinars provide some of that support.”
Burkhart affirms that the International Oral Lichen Planus Support Group has reached worldwide status and continues to grow in recognition among patients and practitioners. Founded in 1997, it has been instrumental in helping patients find someone who is knowledgeable about oral mucosal diseases in their area of the world.
“The group does not diagnose via the Internet; rather, our goal is to assist the patient in answering specific questions and encourage long-term care with their practitioner,” she says.
Burkhart believes the new webinar format has improved the group’s communication. Typically, the hosts receive numerous e-mails before and after the webinar because the group’s 5,000+ members are informed about the seminar, invited to participate and encouraged to submit questions. Because questions and information presented during the discussion often set in motion a whole array of comments and dialogue, they also get follow-up e-mails after the webinar.
With the evolving technology in today’s world, the support group wants to improve its capability to reach people and provide information in a sophisticated manner that can be modified to fit the needs of individual members. It also wants to reach out to health care providers who desire assistance, and to present its concepts and experiences formally to large groups of dentists, physicians and other health care providers.
To advance its goals and support its mission, the International Oral Lichen Planus Support Group now is accepting donations through a recently established account with the TAMHSC Foundation.
“We hope that by accepting donations, we will be able to increase our functions with regard to providing more information and increasing our sessions,” Burkhart says. “We are still a nonprofit organized group and do not promote any products except those that we use in the Stomatology Center, primarily based on evidenced-based research.
“For years, patients who have received services from our organization and many others have asked how they can help,” she continues. “Now we have a mechanism in place for just that purpose.”
For more information about oral lichen planus or the support group, visit the group’s website at www.iolpdallas.org. To make a donation, click on “How to Help.”