The Many Faces of Moebius Syndrome!

(This was published in the 2008 winter edition of the moebius syndrome newsletter http://www.moebiussyndrome.com/index.cfm?objectid=7686E4E1-E04C-F06B-34B38F92D3EBAC1B )

Results from Moebius Syndrome Psychology Study I want to thank everyone with Moebius syndrome who participated in my thesis study, Facial Expression Recognition, Social Competence, and Adjustment in People with Moebius Syndrome, As a person with Moebius syndrome, I am proud that we have made this the largest psychological study ever conducted on people with Moebius! My advising professor Dr. David Matsumoto and I were interested in whether people with Moebius had difficulty recognizing facial expressions in others. We also studied whether people with Moebius had difficulty with anxiety, depression, and social skills. The study was conducted on the Internet and included standardized, valid, and reliable measures of depression, anxiety, satisfaction with life, social skills, and facial expression ability. Thirty-seven people with Moebius participated, and a control group of 37 people without facial movement problems was selected to match the Moebius participants on age and gender. Some psychological theories propose that people recognize others’ facial expressions by subtly mimicking them. Since people with Moebius cannot mimic expressions, some psychologists predict that they would have difficulty recognizing facial expressions. Contrary to smaller previous studies that found that facial movement impairment resulted in difficulty recognizing facial expressions, we found that most participants with Moebius performed as well as the control group on the facial expression recognition task. However, a few participants with Moebius did not perform as well on this task. Facial expression recognition accuracy is important for people with Moebius because facial expressions are useful social cues. We are working on ways to help people develop and improve these skills. Several other smaller studies of people with Moebius or other types of facial paralysis found higher depression and anxiety in these groups. Our study found that people with Moebius do not have higher levels of depression and anxiety, and they experience the same levels of satisfaction with life as typical people. These results suggest that people with Moebius are a strong and resilient bunch of people, and the syndrome doesn’t negatively affect most people’s well-being. But of course, most of us already knew that! Facial expression is very important during typical social interaction. There is much evidence to suggest that certain basic facial expressions (anger, contempt, disgust, fear, happiness, sadness, and surprise) are universally recognized and displayed across all cultures. As a result, most people with Moebius syndrome, myself included, may not communicate in what is perhaps the one universal language. Given the importance of facial expression to typical social interaction, I wanted to explore social skills in people with Moebius. We found that people with Moebius had lower confidence in their social skills compared to the control group. People with Moebius may have low confidence in their social skills because other people have difficulty recognizing their emotions and facial expressions. To facilitate social interaction, I predict that people with Moebius syndrome can use alternative ways to be expressive, such as body language and vocal tone. Following up on these results from my thesis study, my next study will explore how people with Moebius and other types of facial paralysis communicate during social interaction, and what strategies they can use to improve social interaction. We are submitting articles about the results of my thesis study to scientific journals. I hope that this study will raise awareness in the scientific community and encourage more studies focused on quality of life with Moebius syndrome. I graduated with my Masters degree from San Francisco State University in May 2008, and I am now a psychology PhD student at Tufts University near Boston. I am already seeking participants for my next study, and you can read about how to participate below. You can find more information on my research and download my entire Masters thesis from my website http://kathleenrbogart.googlepages.com.

If you have questions about my research, or are interested in participating in a future study, please contact me at kathleen.bogart@tufts.edu. Tell Us About Your Experience Living with Facial Paralysis: Participate in Our Research! I am a psychology doctoral student at Tufts University, and I have Moebius syndrome. Our lab is studying how people with Moebius Syndrome and other types of facial paralysis communicate. We are interested in how people with facial paralysis express their emotions and how other people form first impressions about them. Do you live in the Northeastern US or plan to be in the area? Do you have facial paralysis and are you 18 or older? If you choose to participate, you will complete questionnaires and participate in a one-time 45 minute videotaped interview about your experience with facial paralysis. Clips from your interview will be shown to other participants in order to collect their impressions. If you are interested or have any questions, please contact: Kathleen Bogart Psychology Doctoral Student Tufts University Phone: 225-266-8638