alexa Vitiligo is more than skin deep: a survey of members of the Vitiligo Society.


Journal of Pigmentary Disorders

Author(s): Talsania N, Lamb B, Bewley A

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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. AIM: 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. CONCLUSION: 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. © 2009 The Author(s). Journal compilation © 2009 British Association of Dermatologists. This article was published in Clin Exp Dermatol and referenced in Journal of Pigmentary Disorders

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