Table 4.

Psychosocial Outcomes and Quality of Life in Patients with SWS

Impact of Visible Skin Disease on Patients (Ablett and Thompson, 2016)	■ Feeling a sense of being different from others due to their appearance leading to isolation, especially if they are teased about their birthmark ■ Avoiding intimate behaviors due to embarrassment about their appearance ■ Need to educate others due to a lack of sympathy or underestimation of the impact of the skin condition on the individual’s life by medical professionals ■ Feeling a sense of powerlessness and separation as many individuals have been viewed as having “special needs” due to their skin condition
Impact of Visible Skin Disease on Parents and Caregivers (Ablett and Thompson, 2016)	■ Treatments for skin disease are often time consuming, which takes away from spending time with spouses, other family members, and work ■ Feeling psychological strain when strangers make comments about their child’s skin condition and during painful treatments for the skin condition ■ Feeling blamed for not preventing sequela of the skin disease
Negative Impact of Treatments for Visible Skin Disease on Patients (Ablett and Thompson, 2016 and Bemmels et al., 2013)	■ Addiction to attaining a perfect result ■ Missing school or work for treatments ■ Adjusting to an evolving appearance ■ Wondering when treatments will end ■ Experiencing stigma related to undergoing surgery due to missing school or work and their changing appearance ■ Strains on the parent (or caregiver) and child relationship as some resent their parent’s suggestion that there was something about their appearance that needs to be changed
Positive Impact of Treatments for Visible Skin Disease on Patients (Ablett and Thompson, 2016 and Bemmels et al., 2013)	■ Improved self-esteem and reduced stigmatization when the appearance is more “normal” after treatments ■ Less staring, questioning, and teasing