{"id":12656,"date":"2012-07-15T17:03:58","date_gmt":"2012-07-15T21:03:58","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=12656"},"modified":"2012-07-16T07:41:13","modified_gmt":"2012-07-16T11:41:13","slug":"facial-paralysis-not-personality-paralysis","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2012\/07\/facial-paralysis-not-personality-paralysis.html","title":{"rendered":"Facial Paralysis, Not Personality Paralysis"},"content":{"rendered":"

Anyone who has doubts about including patients\u2019 input in research studies should talk with Kathleen Bogart, PhD<\/a>.<\/p>\n

\"Kathleen<\/a><\/p>\n

She focuses on the social ramifications of facial paralysis, both congenital (like Moebius Syndrome<\/a>) and acquired (like the often partial facial paralysis of Bell\u2019s Palsy or Parkinson\u2019s). She presented her research at the recent Moebius Syndrome Conference in Philadelphia and I got there early to get a good seat.<\/p>\n

As the room filled up, past capacity, I became aware of how many children and teenagers were in the room, along with parents, grandparents, and great-grandparents. We were all there for an academic lecture, but some of us were going to be coloring.<\/p>\n

First Dr. Bogart talked about how there are seven universal facial expressions, understood across all cultures: happiness, surprise, contempt, sadness, anger, disgust, fear. Someone\u2019s ability to recognize \u2013 and use \u2013 those expressions helps determine their ability to navigate in the world.<\/p>\n

She then talked about how, in research studies, people who are very expressive are rated more positively overall \u2013 observers think expressive people are happier, for example, than people who don\u2019t smile broadly or move their hands when they talk. People with facial paralysis, however, are likely to be perceived as depressed. There were also studies showing that people with facial paralysis were actually<\/em> depressed and less satisfied with life than other people. Further, researchers suspected that people with facial paralysis were less perceptive of emotion, less able to even identify those universal facial expressions because they couldn\u2019t mimic them with their own faces.<\/p>\n

It all sounded fishy to Dr. Bogart, even as an undergraduate. So she reviewed the literature and found that none of the studies differentiated between congenital and acquired facial paralysis. It took someone with Moebius \u2013 Dr. Bogart \u2013 to focus on the very different experiences of someone who has had their whole life to adapt vs. someone who has a sudden, later-in-life change in how they interact socially. It turns out that people with Moebius are just as happy and satisfied with life as everyone else. They are also just as likely as everyone else to be able to identify emotions on someone\u2019s face.<\/p>\n

It was very satisfying to watch Dr. Bogart present her own research, which has knocked down all the assumptions made by social psychologists who had never thought to ask someone with Moebius to contribute their insights. Through the Moebius Syndrome Foundation and a UK organization, Changing Faces<\/a>, she includes people with congenital facial paralysis in all her studies, despites its rarity. (You can read more about her research in this New York Times<\/em> story: \u201cSeeking Emotional Clues Without Facial Cues\u201d<\/a>)<\/p>\n

When Dr. Bogart asked a group of adults with Moebius to share some coping techniques, they answered:<\/p>\n