Our Fight against stigma on Vitiligo

Compiled by: Alvin Tafadzwa Matewa

Non Profit Company Reg. number K2011/120375/08 Department of Social Development Reg. number 097-175-NPO

Table of Contents
Introduction What is Vitiligo? Who gets vitiligo? What determines skin colour? How does vitiligo develop? How is vitiligo treated? Treatment of vitiligo in children Repigmentation Therapy Vitiligo in South Africa Beyond Vitiligo Reference Appendix 2 3 3 3 3 4 5 5 5 6 7 8

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Introduction
This document seeks to define vitiligo, the skin condition which affects 1% of the worlds population and give a short introduction on Beyond Vitiligo. This skin condition has been present for centuries; its only in recent years that it is slowly being noticed due to celebrities that have since been diagnosed with vitiligo. For example, Michael Jackson had vitiligo although many still dispute the fact. The late Dr. Thamsanqa Kambule from Witts University, who turned white due to vitiligo, was known as the black man who turned white. The famous South African actor Leleti Khumalo from the Sarafina fame has vitiligo. We have the privilege of working with her on BV as our brand ambassador. The lack of knowledge within our society prompted Gaone Tlhong (founder) to establish an organisation to fight against the stigma in the community. With the help of BV family which is made up of different individuals from different backgrounds, we intend to fight the stigma through Awareness, Support, Viducate (vitiligo education) and acceptance. After reading this document one should be in a position of understanding what vitiligo is, treatments that are used for it, effects that come from having it and what Beyond Vitiligo in South Africa is all about.

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What is Vitiligo?
Vitiligo is a skin condition resulting from loss of pigment which produces white patches. Any part of the body may be affected. Usually both sides of the body are affected. Common areas of involvement are the face, lips, hands, arms, legs, and genital areas. Cape Town Dermatologist This condition usually starts with a small white spot and spread to different parts of the body. In some cases size of those white patches may also increase. Vitiligo is not dangerous and it causes no harm but is unacceptable because of cosmetic factors.

Who is affected by Vitiligo?

According to National vitiligo Foundation Vitiligo, affects one or two of every 100 people. About half the people who develop it do so before the age of 20; about one-fifth has a family member with this condition. It may be an autoimmune process (the body makes antibodies to its own pigment cells). Most people with vitiligo are in good general health, although vitiligo may occur with other autoimmune diseases such as thyroid disease.

What Determines Skin Colour?

Melanin, the pigment that determines colour of skin, hair, and eyes, is produced in cells called melanocytes. If these cells die or cannot form melanin, the skin becomes lighter or completely white.

How Does Vitiligo Develop?

Typical vitiligo shows areas of milky-white skin. However, the degree of pigment loss can vary within each vitiligo patch. There may be different shades of pigment in a patch, or a border of darker skin may circle an area of light skin. Vitiligo often begins with a rapid loss of pigment. This may continue until, for unknown reasons, the process stops. Cycles of pigment loss, followed by times where the pigment doesn't change, may continue indefinitely. It is rare for skin pigment in vitiligo patients to return on its own. Some people who believe they no longer have vitiligo actually have lost all their pigment and no longer have patches of contrasting skin colour. Although their skin is all one colour, they still have vitiligo. Check out Appendix The course and severity of pigment loss differ with each person. Light-skinned people usually notice the contrast between areas of vitiligo and suntanned skin in the summer. Year round, vitiligo is more 3|Page www.beyondvitiligo.org

obvious on people with darker skin. Individuals with severe cases can lose pigment all over the body. There is no way to predict how much pigment an individual will lose.

How is Vitiligo Treated?

Sometimes the best treatment for vitiligo is no treatment at all. In fair-skinned individuals, avoiding tanning of normal skin can make areas of vitiligo almost unnoticeable because the (no pigment) white skin; of vitiligo has no natural protection from sun. Contrary, a recent study has proved that people with vitiligo have natural protection against skin cancer. They should wear a sunscreen with a SPF of at least 30 should be used on all areas of vitiligo not covered by clothing. Avoid the sun when it is most intense to avoid burns. Disguising vitiligo with make-up, self-tanning compounds or dyes is a safe, easy way to make it less noticeable. Waterproof cosmetics to match almost all skin colours are available. Stains that dye the skin can be used to colour the white patches to more closely match normal skin colour. These stains gradually wear off. Self-tanning compounds contain a chemical called dihydroxyacetone that does not need melanocytes to make the skin a tan colour. The colour Although this may provide some from self-tanning creams also slowly wears off. None of consolation for people with vitiligo, these change the disease, but they can improve appearance. they should still be careful in the sun. Micropigmentation tattooing of small areas may be helpful. As they know, they sunburn quickly, If sunscreens and cover-ups are not satisfactory, your doctor may recommend other treatment. Treatment can be aimed at returning normal pigment (repigmentation) or destroying remaining pigment (depigmentation). None of the repigmentation methods are permanent cures.
and a lower risk of cancer doesn't mean zero Professor Dot Bennett, study author

Contrary, a company in Germany known as vitiligo-vitiligo they believe vitiligo can be treated successfully because they use natural products by the following treatments: Eubiotic substances (substances which are natural parts of our metabolic system and without which our metabolic system cannot survive (concentrated essential nutrients). Essential nutrients, which are needed in the biological process of pigment synthesis. Vitamins, which lower the concentration of HOMOCYSTEIN in our system (one assumes that HOMOCYSTEIN plays an obstructing role with the synthesis of melanin (= pigment synthesis).

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Treatment of Vitiligo in Children

Aggressive treatment is generally not used in children. Sunscreen and cover-up measures are usually the best treatments. Topical corticosteroids can also be used, but must be monitored. PUVA is usually not recommended until after age 12, and then the risks and benefits of this treatment must be carefully weighed.

Repigmentation Therapy
Topical Corticosteroids - Creams containing corticosteroid compounds can be effective in returning pigment to small areas of vitiligo. These can be used along with other treatments. These agents can thil'1 the skin or even cause stretch marks in certain areas. They should be used under your dermatologist's care.

Vitiligo in South Africa

No much research has been done on vitiligo in South Africa; vitiligo has been there for many decades. This is evidence lies on old people that we have personally met in South Africa. We have undertaken a research on Vitiligo trying to get answers on the condition that has caused emotional stress and fear among individuals in the society. The following are myths associated with vitiligo in South African communities:

Mollo wa badimo this is a Tswana saying which meant you have been burnt by ancestral fires who are not happy about something. This has been one of the most popular definitions of vitiligo in the communities and up to now its still vibrant. O madi mabi- you have bad luck One has a spiritual calling to be a Sangoma traditional healer You have been bewitched You are cursed These are some of the few myths that people say in the communities and they prompted us to create a platform of viducation. Its through such myths that the communities develop hatred and hostile feelings against vitiligians.

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Beyond Vitiligo
Beyond Vitiligo was coined on 25June 2011, its an idea that has been gathering motion throughout the years. The organisation was named Beyond Vitiligo because of the notion that vitiligo has no cure and the only way to beat vitiligo is by accepting the skin condition and be able to see beyond the patches. Today BV is operating as a fully registered Non-profit organisation, with six board members. The only thing hindering progress on viducating the communities is funding and government support. Below is an outline of BV mission statement and its goals it intends to achieve.

Vision To eradicate the stigma on Vitiligo in South African communities and beyond Mission Fighting stigma on Vitiligo in South Africa communities and beyond through creating Awareness, Support, Viducating and Acceptance
Awareness - One of major objective to reach all corners of South Africa to educate the

communities on Vitiligo; this will be done through media and numerous outreach programs. Support - is to be provided to those affected by the skin condition through workshops, true life stories and sharing ideas on the new medications. This support will be extended to parents with children affected by Vitiligo in order for them to understand the emotional stress associated with Vitiligo Viducate - BV intends to Viducate (Vitiligo education) the community on the effects of Vitiligo and the history through social media networks, lectures, presentation, road shows, TV shows, radio interviews etc. Acceptance - We intend to create an environment which encourages acceptance of Vitiligo infected individuals in the community and as well as reaching out to communities to accept Vitiligo as a normal skin condition. As discovered, Vitiligo has been associated with numerous cultural connotations in the community, making it difficult for its acceptance.

Vitiligo Challenges in South Africa

From our research most doctors and nurses don't real no about vitiligo. Hope the universities would consider a module on vitiligo in their curriculum. www.beyondvitiligo.org

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The cost of cosmetics and sunscreen is not bearable. If only everyone can afford the basics then they will not have to go the sunburns and have difficult in maintaining vitiligo. Not affording treatments like PUVA, and the process of seeing a dermatologist in a public hospital. They give you dates that are too far for your next visit The cost of seeing dermatologist in public hospitals is very exorbitant Vitiligo shouldn't be only a module for dermatologist but even nurses and general doctors should know about it.

As an organisation we are looking for any help that works towards fighting the stigma. Our doors are open to those with vitiligo and those without vitiligo and believe in the cause. We are working on research, vitiligo education in schools; workshops just to mention a few and we definitely need help. For any assistance you can email us: info@beyondvitiligo.org gaone@beyondvitiligo.org peggy@beyondvitiligo.org shoky@beyondvitiligo.org

Reference
http://www.vitiligos.com/people-with-vitiligo/famous-people/ http://capetowndermatologists.co.za/ http://beyondvitiligo.org http://www.vitiligoguide.com/vitiligo-history/ http://www.avrf.org www.vitiligoorganics.com/ www.vitiligosociety.co.za http://news.bbc.co.uk/2/hi/8635844.stm

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Appendices
Beyond Vitiligo Organisational structure

chairman
Gaone Tlhong

BV Brand Ambassador
Leleti Khumalo

PR Director
Shoky Motau

Project Director
Peggy Seerane

Marketing Director
Alvin Matewa

Logistics Director
Makhatheng Khesa

PR Assistance
Busisiwe Malinga

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Pictures

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