World Vitiligo Day

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The World Vitiligo Day, observed on June 25, is an initiative aimed to build global awareness about vitiligo, a frequent and often disfiguring disease that can have significant negative psychosocial impact on patients, also because of numerous misconceptions still present in large parts of the world.

Vitiligo is an acquired disease characterized by skin depigmentation, due to destruction or malfunction of melanocytes (cells that produce melanin). It is present worldwide, and its prevalence in different countries ranges from less than 0.1% to more than 8% of the general population (≈ 1% in the United States and in Europe);[1] thus, it can be estimated that approximately 100 million people in the world are affected.

Despite these data, worldwide awareness and knowledge of vitiligo are often rather inadequate,[clarification needed] and several misconceptions prevent a correct approach to the disease: as some studies suggest,[2][3] a significant number of patients identifies as possible causes poor medical care, personal behavior, diet, pollution, even “fate” or “evil eye”, and has doubts or wrong ideas about contagiousness; moreover, in many countries vitiligo is confused with leprosy. Even general physicians sometimes contribute to misinformation, by telling patients that there is no cure and no treatment is effective or classifying vitiligo as a purely aesthetic problem, not worthy of research or treatment.

While not life-threatening, vitiligo has heavy psychosocial impact on the quality of life of persons, particularly when exposed areas, such as face and hands, are affected; the negative impact is even worse for patients with darker skin types, because of the higher contrast of white patches on their skin. Depression, anxiety, social embarrassment and self-consciousness caused by vitiligo are very frequent, and the disease usually leads to highly significant decrease of the quality of life and restriction of participation in domestic and social life.[2][4][5] Stigmatization is also common, to a variable extent depending on sociocultural environment: avoidance and concealment are the most typical reactions to vitiligo,[6] but rejection, insult, discrimination at work and sexual difficulties, including being considered unfit for marriage, are also frequent.[7][8][9]

The idea of a World Vitiligo Day was first nursed by Steve Haragadon, the founder of the Vitiligo Friends network, and then developed and finalized by Ogo Maduewesi, a Nigerian vitiligo patient who is the founder and Executive Director of the Vitiligo Support and Awareness Foundation (VITSAF). In her words, “World Vitiligo Day is a day to create extensive awareness on vitiligo and a day dedicated to all living with vitiligo globally”.[10] The first World Vitiligo Day (also defined as “Vitiligo Awareness Day” or “Vitiligo Purple Fun day”, from the color chosen as Vitiligo Awareness Color[11]) was observed on June 25, 2011. The choice of June 25 as World Vitiligo Day is a memorial to musical artist Michael Jackson, who suffered from vitiligo from 1986 until his death, which occurred on June 25, 2009. The main event of the first World Vitiligo Day occurred at Silverbird Galleria’s Artrum in Lagos, Nigeria, with the participation of several volunteers with different experiences (dermatologists, motivational speakers, dancers, artists, comedians, patients), united by the common will of spreading knowledge and awareness about vitiligo. Simultaneously, other events took place in other parts of the world, organized by local associations.

In 2012, Vitiligo Research Foundation (VRF), a non-profit organization aiming to fund and fast-track medical research, as well as connect investigators, care providers, patients and philanthropists, to accelerate vitiligo research and relieve suffering of patients,[12] registered the Web domain name 25june.org and joined VITSAF and cooperating organizations to increase the efficacy of their efforts in favor of global vitiligo awareness. A goal of the World Vitiligo Day 2012 was to raise 500,000 signatures to address the United Nations in order to:

  • recognize this disease associated with severe social complications;
  • recognize the desire to pursue multilateral efforts in therapy development and health-care education;
  • designate June 25 as the World Vitiligo Day to be observed by the United Nations and Member States every year.

To this aim, an online petition[13] has been created.

References[edit]

  1. ^ Alikhan A, Felsten LM, Daly M, Petronic-Rosic V. (2011). "Vitiligo: a comprehensive overview Part I. Introduction, epidemiology, quality of life, diagnosis, differential diagnosis, associations, histopathology, etiology, and work-up.". J Am Acad Dermatol. 65 (3): 473–491. doi:10.1016/j.jaad.2010.11.061. PMID 21839315. 
  2. ^ a b AlGhamdi KM. (2010). "Beliefs and perceptions of Arab vitiligo patients regarding their condition.". Int J Dermatol. 49 (10): 1141–1145. doi:10.1111/j.1365-4632.2010.04514.x. PMID 20931686. 
  3. ^ Firooz A, Bouzari N, Fallah N, Ghazisaidi B, Firoozabadi MR, Dowlati Y. (2004). "What patients with vitiligo believe about their condition.". Int J Dermatol. 43 (11): 811–814. doi:10.1111/j.1365-4632.2004.02059.x. PMID 15533062. 
  4. ^ Ongenae K, Dierckxsens L, Brochez L, van Geel N, Naeyaert JM. (2005). "Quality of life and stigmatization profile in a cohort of vitiligo patients and effect of the use of camouflage.". Dermatology 210 (4): 279–285. doi:10.1159/000084751. PMID 15942213. 
  5. ^ Pichaimuthu R, Ramaswamy P, Bikash K, Joseph R. (2011). "A measurement of the stigma among vitiligo and psoriasis patients in India.". Indian J Dermatol Venereol Leprol. 77 (3): 300–306. doi:10.4103/0378-6323.79699. PMID 21508568. 
  6. ^ Thompson AR, Clarke SA, Newell RJ, Gawkrodger DJ, Rumsey N, Byron-Daniel J, Charlton R, Clarke A, Clarke S, Harcourt D, James H, Jenkinson E, Lindenmeyer A, Moss T, Newell R, Newman S, Saul K, Thompson A, Walsh E, White P, Williams E. (2010). "Vitiligo linked to stigmatization in British South Asian women: a qualitative study of the experiences of living with vitiligo.". Br J Dermatol. 163 (3): 481–486. doi:10.1111/j.1365-2133.2010.09828.x. PMID 20426784. 
  7. ^ Shah H, Mehta A, Astik B. (2008). "Clinical and sociodemographic study of vitiligo.". Indian J Dermatol Venereol Leprol. 74 (6): 701. doi:10.4103/0378-6323.45144. PMID 19177701. 
  8. ^ Mehta NR, Shaha KC, Theodore C, Vyas V, Patel A. (1973). "Epidemiological study of vitiligo in Surat area, South Gujarat.". Indian J Med Res 61 (1): 145–154. PMID 4756867. 
  9. ^ Parsad D, Dogra S, Kanwar AJ. (2003). "Quality of life in patients with vitiligo.". Health Qual Life Outcomes. 1: 58. doi:10.1186/1477-7525-1-58. PMC 269995. PMID 14613564. 
  10. ^ http://www.facebook.com/notes/ogo-maduewesi/report-vitiligo-purple-fun-day-vitiligo-awareness-day-25th-june-2011/2011494841660
  11. ^ http://www.picbadges.com/support-vitiligo-awareness-day/1863858/
  12. ^ http://www.vrfoundation.org
  13. ^ http://25june.org/petitions/2

External links[edit]