Because prosopagnosia isn't life-threatening, research into the condition didn't exactly spread like wildfire. After Chuck was diagnosed with face blindness, we asked his medical team what resources were available to help him cope with the condition. For the most part, they could only refer to the textbook definition and wish him well. None of them had seen an actual case. They told us that cases of prosopagnosia largely affected patients who were critically ill with other conditions, such as disabling strokes that had bled into both sides of the brain or tumors that had spread into multiple brain regions. Chuck's doctors said that, for these patients, face blindness was the least of their problems -- hardly a heartening perspective for someone facing a life-changing diagnosis.
As a freelance writer who specialized in health care, I began searching the term "prosopagnosia" occasionally on medical websites, such as the National Institutes of Health. These attempts were pretty primitive; after all, this was in the days before search engines.
Although PubMed featured scholarly publications describing prosopagnosia, for years searches for clinical studies came up empty. Around 1997, I got a hit on the NIH website, but my excitement turned to disappointment when the prosopagnosia page was empty. (To this day, clinicaltrials.gov lists no studies for prosopagnosia or face blindness.)
Although the introduction of Google in 1998 made searching easier, it was 2005 before a search directed me to the website www.faceblind.org. I literally ran to get Chuck, and we poured over the website, where he completed a questionnaire about face recognition difficulties. That response led us to Brad Duchaine, a researcher and lecturer at University College London who's now associate professor and head of the Social Perception Lab at Dartmouth College.
At the time, Duchaine and colleagues were focused on face recognition deficits in developmental disorders, but they were collecting names and contact information for individuals who might be interested in future research projects in prosopagnosia. Without hesitation, Chuck added his name to the list.
Several more years passed. In February 2008, we received an email from Duchaine, which read, in part:
"A group of researchers, including myself, have begun a large-scale study of acquired prosopagnosia, and we're interested in recruiting as many subjects as possible. Most of the testing will take place in Vancouver with a group of neurologists and psychologists coordinated by Jason Barton in the Human Vision/Eye Movement Center at the University of British Columbia.
"Our understanding of face processing and its dysfunction has benefited greatly from studies of people who have lost their ability to recognize faces due to brain damage experienced after maturity (acquired prosopagnosia). However, because the condition is relatively rare, few subjects have been studied by labs that specialize in face processing, so much remains to be learned about acquired prosopagnosia.
"Our study involves a large battery of behavioral tests measuring a wide range of abilities (face memory, face perception, face detection, expression recognition, object recognition, low-level visual abilities, etc.) and several scans that provide a detailed view of brain structure and activity in response to visual stimuli. Participants also have the option of enrolling in an experimental trial of perceptual training that we hope will improve face recognition ability."
In May 2010, Chuck's adventures in prosopagnosia research began with a visit to Barton's lab in Vancouver for "a functional MRI study of facial perception in normal subjects, prosopagnosic patients and patients with cerebral infarcts." Findings from that study -- for which I volunteered as a control -- concluded Chuck had a general diagnosis of intermediate prosopagnosia, including "significant problems with recognizing faces, which also extends to other object categories."
Fast forward to this week, when we returned to Barton's lab so Chuck could participate in a face training program. Following the first day of testing, which concluded with a functional MRI, Chuck received a more defined diagnosis of "apperceptive with elements of associative" prosopagnosia. In addition, we heard for the first time in 20 years that facial recognition may -- potentially -- be a skill that can be re-acquired or re-learned, thanks to neuroplasticity. Much work to do, but finally the prospect of "seeing" faces once again.