title: Vitiligo is more than skin deep: a survey of members of the Vitiligo Society.
abstract: BACKGROUND
  Vitiligo is a common, largely acquired skin disease of unknown aetiology, which causes a variable amount of skin and hair depigmentation in affected people. It affects over half a million people in the UK alone, and a massive 50 million people worldwide.
  
  
  OBJECTIVE
  To quantify the psychosocial burden of vitiligo in the UK, by estimating its effect on daily life.
  
  
  METHODS
  All members (n = 1790) of the Vitiligo Society, a UK national patient support group, were sent a questionnaire. Survey questions included demographics, disease-related characteristics, effect of vitiligo on daily life, and psychosocial support measures for patients with vitiligo. Results.  In total, 520 (29% of members) responded, of which 354 (68%) were women. Vitiligo affected the hands in 414 (80%) and the face in 394 (76%) of the respondents. Over half (56.6%) of respondents indicated that vitiligo moderately or severely affects their quality of life (QOL). Finding a cure or effective lasting treatment was the main priority for most affected respondents. Most respondents obtain information about their disease from nonmedical sources: 431 (83%) from the Vitiligo Society and 129 (25%) from the internet, compared with 61 (12.5%) from dermatologists.
  
  
  CONCLUSIONS
  Vitiligo is a skin condition that moderately or severely affects the QOL of most patients. Although most patients look for a cure or long-lasting treatment, only 12.5% of respondents to our survey had obtained information from a dermatologist. Vitiligo is a common condition that affects more than the skin, and has profound psychosocial implications for affected patients.
authors.affiliation: Department of Dermatology, Whipps Cross University Hospital, London, UK.
authors.forename: N
authors.initials: N
authors.lastname: Talsania
authors.forename: B
authors.initials: B
authors.lastname: Lamb
authors.forename: A
authors.initials: A
authors.lastname: Bewley
mesh_terms: D000293:Adolescent; D000328:Adult; D017677:Age Distribution; D017668:Age of Onset; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D005260:Female; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic / Q000379:methods; D011594:Psychometrics; D011788:Quality of Life; D012649:Self Concept; D006113:United Kingdom / Q000453:epidemiology; D014820:Vitiligo / Q000453:epidemiology / Q000473:pathology / Q000523:psychology* / Q000534:rehabilitation; D055815:Young Adult