Coping with stigma is an important aspect of achieving positive self-esteem for people living with visible genetic differences. Individuals with craniofacial differences are at particularly high risk for experiencing social stigmatization and discrimination [Topolski, et al., 2005
; Strauss, et. al., 2007
; Sarwer, et. al., 1999
]. Human targets of stigmatization (individuals with craniofacial conditions being one such example) often are at risk for experiencing social and psychological stress, which can have a negative effect on their quality of life [Pruzinsky, 1992
]. Consequently, individuals with visible facial differences need to find and implement effective coping strategies to sustain a positive psychological well-being [Puhl and Brownell, 2006
]. This study explored the use of a unique photography and video experience as a vehicle for helping individuals with craniofacial conditions feel better about themselves as they continue to cope with the negative effects of social stigmatization.
Stigmatization describes the process by which a person is identified as being “different,” and subsequently devalued because of that difference. Stereotypes, often negative, ensue. Although research on the social stigmatization of individuals with visible genetic differences is only starting to emerge, there is already a substantial amount of literature about stigma related to more common conditions. For instance, stigma literature is abundant in research related to HIV/AIDS and other infectious diseases such as tuberculosis [Heijnders and Van Der Meij, 2006
]. There is also a growing literature on the stigma of weight as obesity continues to become more prevalent [Puhl and Latner, 2007
]. However, relatively little research has been conducted on the stigma, particularly perceived stigma, associated with living with a genetic condition. Research focusing on the quality of life of individuals living with several specific genetic conditions indicates that perceived stigma may be frequent. Findings from studies involving individuals affected with Marfan syndrome [Peters, et al., 2005
], achondroplasia [Gollust, et al. 2003
], Turner syndrome [Sutton, et al., 2005
] and Proteus syndrome [Turner, et al., 2007
] demonstrate the prevalence of stigma and its negative effects, suggesting a need for further investigation into ways in which individuals might identify effective coping mechanisms.
Within the craniofacial literature, a few research studies concluded that individuals with craniofacial differences are at particularly high risk of experiencing social stigma, especially during early adolescence when appearance is an important aspect of relating to others and forming peer relationships [Topolski, et al., 2005
]. A study by Strauss and colleagues 
describes the stigma experiences of 185 adolescents with facial differences (both congenital and acquired) over a one month period. Participants were first asked to report stigma experiences that occurred within the week prior to participating in the survey: 35% reported that they noticed people staring at their face. When asked to comment on stigma occurrences over the past month, 29% of study participants reported overhearing people say something about their face, 12% felt excluded from peer activities on account of their appearance, and 31% either got into a fight or were teased about how their face looked. In another study, 38% of individuals with craniofacial differences reported stigmatization or discrimination in the workplace, and 71% reported discrimination in social situations [Sarwer, et. al. 1999
]. Together, these studies suggest stigma experiences may be frequent among individuals with facial differences.
The frequency of social stigmatization alone does not reveal its effects on individual well-being. According to Crocker and Major 
, the effect of social stigmatization on self-esteem is said to be a significant predictor of psychological well-being and mental health; but, “despite the strong theoretical support for such a prediction, empirical evidence that members of stigmatized groups have lower self-esteem than nonstigmatized individuals is remarkably scarce” [Crocker and Major, 1989
, p. 611]. These authors account for this theoretical and empirical dissonance by suggesting that individuals with craniofacial differences employ certain protective strategies to avoid internalizing the stigmatization: for example, an affected individual may attribute negative social attitudes and stigmatization to a general prejudice against their group as a whole rather than a prejudice against them specifically, thereby removing personal vulnerability. Another hypothesis put forth by Crocker and Major 
to explain the discordance between the theoretical literature and the empirical data is that stigmatized individuals may simply devalue the attributes upon which others base their criticisms and judgments. Similarly, Puhl and Brownell 
, in their study on weight stigma, concluded that adopting successful coping strategies is crucial in a stigmatized individual’s quest to attain high self-esteem and sustain a positive self-image: “what contributes more strongly to psychological wellbeing is not the stigmatizing situations themselves, but the ways in which an individual copes with these experiences…[P]articular coping strategies are related to both higher self-esteem and lower depressive symptoms” [Puhl and Brownell, 2006
, p. 1813]. In addition, possessing an arsenal of effective coping strategies that can help foster and sustain a positive self-image may also help individuals with rare genetic conditions identify positive attributes and life experiences generated by their unique differences [Eiserman, 2001
]. Specifically, living with and adapting successfully to a visible facial difference may, according to Eiserman 
, allow individuals to develop unique or enhanced skills, such as communication abilities, service to others, observational skills, inner strength, abilities to question society, and embrace new social circles.
The general literature on coping strategies is vast. Coping strategies used by stigmatized individuals may be emotion-focused (for example, avoidance or distancing) or task-focused (for example, journaling or joining a support group) [Lazerus and Folkman, 1984]. Within the literature on individuals living with craniofacial differences, one unexplored coping strategy is the act of helping others. This social phenomenon is considered a mutually beneficial relationship, especially when entered into by individuals living with challenging health circumstances or individuals struggling with their self-esteem [Roberts, et al., 1999
]. The act of helping others can bring benefit to the “helper” by improving his or her sense of well-being through fostering “increased feelings of competence, equality, social usefulness, independence, and social value” [Roberts, et. al. 1999
: p. 843]. A study conducted by Schwartz and Sendor 
explored the benefits of being a peer supporter for individuals living with multiple sclerosis (MS). These scholars concluded that individuals living with MS, when put in a position to support others living with the same condition, not only changed the way they thought of themselves, but their perception of their own quality of life was also enhanced. This change occurred because of a shift in the supporters’ internal standards, values and conceptualization of their quality of life [Schwartz and Sendor, 1999
]. The positive effects of this peer support study were lasting; after two years, the benefits to quality of life outcomes were still evident: “[B]y helping others, the patients were able to reframe their own suffering, derive a stronger sense of meaning in life, and feel a stronger awareness of the existence of a higher power” [Schwartz, et al., 2003
: p. 779].
To our knowledge, no studies have explored the use of helping others as a coping strategy for individuals living with visible genetic differences. However, the findings of the two studies mentioned above support the unanticipated research finding of our study: namely, Positive Exposure (PE), a non-profit organization based in New York City that uses the photography and videography to challenge pervasive social stigmatization generated by the ignorance and fear of genetic difference, can benefit individuals living with craniofacial differences. PE provided a concrete and enjoyable vehicle through which individuals with visible genetic conditions felt they could help others, in effect helping them further their own adaptation and personal growth.