The International Oral Lichen Planus Support Group has been operational since 1997 when I originally joined Baylor College of Dentistry as a faculty member. At this point, I cannot tell you exactly how many patients I have spoken with through email or even observed clinically over all the years. What I can tell you is that the person who contacts us through the support group falls into several typical profiles:
• He or she is newly diagnosed with a mucosal disease, primarily lichen planus. In some cases, the individual may be totally misdiagnosed and actually may have another skin-type disorder. Usually, the patient is given little information and begins to voraciously search the Internet for any information to learn about this new diagnosis.
• The person needs to find someone who can treat their problem, because he or she has had no success after months or years of treatment, and the patient is usually at the “end of their rope” and has lost all hope of recovery.
• The person may have developed a more serious disease such as oral cancer, and they are just plain afraid of the outcomes. Or, the person may have successfully recovered from the malignancy, but is trying to do all he/she can to prevent a second cancer.
• Individuals are basically just searching for someone who will listen to them because they feel no one else is hearing them, and they suffer from a lack of “control” over their disorder and possibly even their life as well.
Some of these issues are relevant in varying degrees with all patients who contact us. To me, the perception that they have little control over what is happening to them is probably the one that I have observed most often. Since I consider myself to value “control” over my own life, a lack of control is something that I know I do not enjoy myself nor do I react to very well. I fly quite a bit and think that flying has assisted me in adjusting my own “need to control” situations to a large degree. When you get on a plane, you essentially turn your well-being over to strangers and hope that you have chosen the correct plane, while praying that the pilot did not have an intense fight with his/her spouse and that no one on the plane has an untreated mental illness, including the crew. Additionally, you must also count on good weather coupled with a plane that has no mechanical problems or the possibility of terrorists who somehow managed to avoid detection. I always select a window seat since I basically fly my own plane from this window seat along with the well-trained pilots.
NANCY W. BURKHART