AFRICA VITILIGO CONFERENCE 2012

AFRICA VITILIGO CONFERENCE

(STAKEHOLDERS CONFERENCE)

AFRICA

LAGOS 2012

LAGOS STATEMINISTRY OF HEALTH

E N D O R S E D B Y: S U P P O R T E D B Y:P O W E R E D B Y:

OCTOBER 2012

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CONTENTS

AFRICA

LAGOS 2012

Pg 4 - VITSAF ED, Host’s Profile

Pg 5 - Lead Speakers Profile

Pg 7 - Vitiligo patient-driven groups in Africa

Pg 10 - Abstracts

Pg 12 - The Nigerian experience of living with

vitiligo: developing self-help

AFRICA VITILIGO CONFERENCE (STAKEHOLDERS CONFERENCE) 4

Vitiligo patient-driven groups in Africa

Senegal

Vitiligo Support, Senegal

Kenya Vitiligo Society Of Kenya

Ethiopia Vitiligo Support, Ethiopia

4. Counseling the persons living with vitiligo as well as their families.

VISOKE also look forward to providing cosmetic camouflaging services to patients who cannot bear with the white vitiligo marks. VISOKE intend to do this by partnering with the Albinoism Society of Kenya(ASK) to import cosmetics duty and tax free. This will make the cosmetics affordable to most of the users.Vitiligo in Senegal is a story because a great religious leader VISOKE Group Meetings. had the revered religious leader Sheikh Ahmadou Bamba VISOKE is a free membership group which meets on murid. Empirical belief and according to all the people who quarterly basis in the capital city. The group offers favorable have vitiligo are men of paradise and are good people.social support in various ways:That is why in our daily lives in our families, our friends and

our surroundings we are accepted without discrimination, 1. It provides an opportunity to members to express but reality is different for the social inclusion of people living

their fears and uncertainties to close friends during with vitiligo sometimes people tell me that the phone the meetings.Appears when they submit a resume without a photo are

2. It provides a chance to every member to relate with called for interview, but often they are not recruited, when the other patient who has learnt to bear with they deposit a photo, they are not called for interview. his/her condition with patience, hope and dignity.Therefore the major problem here is social exclusion

3. It provides room to meet the spiritual component because vitiligo is not accepted socially and even when we of our lives together. When we believe in God, we try to find a solution by traditional medicine, people ask you pray and trust in Him and we find the strength to why you want to remove it, you have something that you do face the future with hope even if we still have a long not know, vitiligo has no medicine at the legal, doctors say way to go.there is no remedy what they do is give us some sunscreen

ointments.When you leave the door steps of your house either for work Our ambition now is to work to gather all the people living or any other duty, the stares begin with every eye focused on with vitiligo in Senegal first to help each other and share our the pale patches left on your skin. But anyway, what would convictions firmly then work for the development of vitiligo we expect since all they understand is the myths that the national network in Africa and community has rammed in their heads. They will talk of any be tween cont inen t s fo r wild thing like... He must have crossed where the water used recognition of the International for bathing the twins was thrown...Her grandparents are Day of vitiligo – World Vitiligo annoyed with her birth so the wrath of the ancestors are Day – June 25.working on her.., or it is a mystical factor “chira”. Others will We believe that we can achieve talk about how you got burn with by relying primarily on our some hot water by your spouse. personal convictions sources of Majority of people talk about skin motivation can help us to cancer or the leprosy. All these achieve our lofty goalsexplain very well the level of ignorance in both the lay public and Coordinator – Vitiligo Senegalthe patients in Kenya.Name - Gueye Doudou Together we shall win!Facebook - vitiligo.sunugal

Email: [email protected]/Executive DirectorJames LabanFacebook – Vitiligans in KenyaEmail – [email protected]

Vitiligo Society of Kenya (VISOKE), since its inception in the year 2010 has come out strongly to look at the plight of

persons living with vitligo in Kenya.VISOKE benefited a lot from VITSAF and it borrows heavily

In Ethiopia, majority of people does not know what vitiligo is from this NGO based in Nigeria. VISOKE is still very proud to and its source. The society associates the cause of vitiligo to be enjoying cordial working relations with VITSAF.curse, anger, sin, and punishment from God. Efforts on VISOKE has got its main objective focused on awareness awareness of vitiligo are less made in the society. As far as creation .It looks forward to achieving this through my understanding and observation is concerned, adequate mode of treatment by specialized doctors and trainings are 1. Staging road walks, plays and drama.not rendered to society and to those persons with vitiligo. 2. Publishing booklets, fliers, and brochuresAs matter of fact, no distinction is made between albinism 3. Having public forums with schools, churches etc


and vitiligo cases; both vitiligo and albinism skin disorders International scene, may God bless you richly.are used as a pejorative terms to annoy those persons. Thus all these facts are an indication of problems aggravating :vitiligo cases in the society.

Everything was perfect in my life until I was diagnosed with I am Tamru Kedir a blind and vitiligo person born in VITILIGO. It was around June 2004 when I was finalizing with Ethiopia on December 25 1983 EC. I lost my sight when I was my first Degree in Library and Information Science at two-years-old due to retina damage. My family tried Makerere University, Kampala – Uganda, when I faced this nothing to save my eye-vision through modern medical Vitiligo trauma. It was really a year of great life experience treatment. Rather, they tried to heal me through traditional and challenges. My skin from nowhere started to react, home-made drugs. However, the traditional drugs gave me changing from its original birth color uncontrollably no solution in healing and returning back my vision. especially in the focal parts of my body such as the; face, In addition to blindness, I faced with another skin disorder mouth, hair, arms and legs. This caused me a lot of stress as; I known as vitiligo which depigments my skin to whitish color. had never seen or heard of this type of skin patches. What I am studying masters of human rights in Addis Ababa even caused me more stress is when I visited skin doctors University while creating vitiligo who could not even know the name of my problem. It was awareness in my little way. not until I visited the Internet and did my own search that I Subsequent to complet ing came to know the name of this skin patches. It was masters of human rights degree, it scientifically termed as VITILIGO. This information from the is my zeal to work fully on vitiligo Internet helped me a lot too, because it explored to me cause especially on human rights many other cases of Vitiligo victims and suggested available issues to raise advocate for the treatments. However the treatments mentioned on the vitiligo. Internet also happened to be very far countries to mention

but a few; United Kingdom, China, India, America and Israel. Coordinator - Vitiligo Support At the same time I was also trying with herbals from various Ethiopia sources, which I also withdrew after some time because of Name - Tamru Kedir the supernatural powers which were attached to them. After Email – [email protected] becoming too desperate with myself I started to think of

salvation and giving my life to Christ. Conversely, I thought that I was the first person to have this skin problem in the whole world since I had never seen it anywhere with people; perhaps I was just not being critical. To this end I therefore used to isolate myself and moving in the city of Kampala

In Africa, Uganda particularly people with VITILIGO have very keenly and vigilant to see if there could be other people not been given much attention by the Health Sector, and of same or similar problem. The few victims I saw were this has caused them to have a continued state of rejection, mostly men. I then wondered how this misfortune could shame, embarrassment and inferiority. Most of them the come to me more as a woman, it was very devastating. attention they have received has been on personal ground. I started facing serious challenges whenever I would meet i.e. People who have felt sympathetic to them and given in a people and especially my friends who used to ask me hand. VITILIGO is very rampant these days; this is very serious case • What exactly was going on in my life and which needs immediate attention by the Health Sector. It's particularly my skin,more frustrating if it gets one in lower and middle classes • Some could just make fun of me and say; Vivian and higher institution as it may lead to someone losing his that is AIDS and it has started on you in the face, /her peer group. It's also very frustrating in years of marriage • Then others could make comments such as; Vivian bracket, this is one of the most trying periods for such that skin problem has no medicine and cure and it victims, because it takes a man or a woman with a high will not get healed. intellectual capacity and state of integrity to marry or get • Others would ask me; If I think I will ever get married to a VITILIGO victim. married at all? There are many people, in our country particularly in the • I will also never forget one person who mocked me village who are victims of VITILIGO whose family or relatives and said I was a good sacrifice. have rejected or ignored them as far as denying them school. I have personally heard of children who have All such comments from different people and sources VITILIGO who fear to go school because their fellow friends distressed me a lot, to the extent that I thought of tease them. committing suicide. I then regretted the day I was born. In

addition to that, some of my campus friends started to reject I am Vivian Najjuka from me .They stopped calling me for any outing even when I Uganda. I have lived with wanted to hang out with them, but I thank God for them. VITILIGO for seven years now. I This is because, later on God connected me to new friends s e n d m y v e r y s i n c e r e who have loved and cared for me, may be God wanted me appreciation to the Vitiligo to first have that intimacy with Him, as an individual and not S u p p o r t a n d Aw a re n e s s in a group.Foundation Group in Nigeria, which trying all possible ways to God has strengthened me and today I am creating Vitiligo advocate for us Vitiligo victims awareness in the University where I lecture and starting a a t b o t h N a t i o n a l a n d Vitiligo Support Group in Uganda.

Uganda Vitiligo Support Group, Uganda

My Experience with Vitiligo


Co-ordinatorName - Vivian NajjukaFacebook - Visugu UgandaEmail - [email protected]

Gaone Petronella Tihong was four years-old when she first showed signs of vitiligo. Born in South African to a Botswana father and a South African

I am a model and an event manager. I mother, Gaone recognizes have been living with vitiligo for 9 South Africa as home, and has years.Working with VITSAF for become the voice of the vitiligo Vitiligo awareness in Ghana and all community in South Africa. their set goals and objectives. When Gaone was 14, her vitiligo

mysteriously disappeared only Gifty Afezuke - VITSAF Ghana to reappear when she was in her Facebook - Vitiligo Support Ghana second year at the University. email - [email protected] The experience was traumatic

for her because the stigma attached to the disease in South Africa is rooted in superstition. Many believe the disease is a curse or punishment handed down to scar generation after generation. The stigma causes many to live in isolation and shame. Recalling names like “twin[Image]color,” . “chameleon,” and “black and white,” Gaone is no stranger Having Vitiligo is a very traumatic condition, most of us the to the taunts of both children and adults alike. Beyond Vitiligo Patients often get demoralized by the way we are Vitiligo is a call to the community to live beyond the disease treated by the rest of the society, mostly Vitiligo Patients cut and to encourage individuals to take vitiligo for exactly what themselves off socially and confine themselves to the four it is; a disease with natural causes, and not a curse.walls of their homes.

People with Vitiligo face hurdles in education and Mission: employment too. Even if only one person in a family has Fighting stigma on Vitiligo in South Africa communities and Vitiligo, the social stigma affects all the other members. I beyond throughcreatingappeal to people not to subject Vitiligo affected persons to Awareness, Support, Viducating and Acceptance.embarrassment by starring at them or discriminating

against them as their self – esteem falls steeply and they develop sense of being rejected. Vision:

To eradicate the stigma on Vitiligo in South African I had Vitiligo when I was 23 years communities and beyondand I find no cure. I had several consultations with professional Organisation Overviewdermato log i s t s and the i r Beyond Vitiligo is an organisation established in 2011 in aresponse is no cure. It came to my bid to fight stigma on Vitiligo inSouth African communities attention as a person suffering by and beyond. The organisation was found and coined by the disease I did a little research GaonePetronella Tlhongon the internet on how to find cure but I find none. Though not This organisation was established through life experience of all those who suffer from Vitiligo living with Vitiligo to assistthose with Vitiligo and those take the extreme to come out and affected to accept this skin condition which is associated talk about it. As it has no cure withsevere emotional trauma. It has been discovered that in neither treatment, nor it has no clear picture on what causes the community people with Vitiligo are looked down upon it. The stigma is attached to Vitiligo Patients and I am hereby and isolated by a community which lack knowledge of the initiating the campaign that Vitiligo is not disease and it is condition.not contagious. I am working on running a public campaign BV is a registered Non-Profit organisation with six directors on Vitiligo together with my fellow patients as well as the who make it possiblefor the organisation to realise their family who are affected. mission. I hope and believe it will help improve the quality of life of it’s afamily made up of people living with Vitiligo and those people with Vitiligo in Namibia and their families and affect with Vitiligo. We see beyond the skin colour towards indeed the community to understand better on this skin acceptance of the skin condition.disorder.

Founder – Beyond VitiligoCo-ordinator, Vitiligo Namibia Name - Gaone Petronella TihongName – Saara Loide Nangula Facebook – BeyondvitiligoSAFacebook – Vitiligo Namibia Email - [email protected] Email - Website -

South Africa Beyond Vitilgo South Africa

Ghana VITSAF , Ghana

Namibia Vitiligo, Namibia

[email protected] www.beyondvitiligo.org


ABSTRACTS

PROF.LOTTI'S VIDEO –AFRICA VITILIGO CONFERENCE, OCT. 18-19, 2012

VITILIGO-etiological factors, treatment modalities and prognosis

Holistic Management of Vitiligo: Exploring a new horizon

Nutritional Approach to Vitiligo & Other Autoimmune Diseases

trigger and influence melanocyte growth, maturation and survival have been little explored. A better understanding of vitiligo repigmentation will provide new therapeutic perspectives leading to development of an ideal weapon against vitiligo. Non-cultured epidermal suspension (NCES) is emerging as treatment of choice for surgical management of vitiligo because it can treat large area with good colour match and without any laboratory facilities.

- Prof.Torello Lotti | University of Rome In this talk I would be presenting an overview of our work “G.Marconi” related to clinical and basic research and our journey over

last 20 years to add colours to vitiligo patients lives.Greetings message from Prof.Torello Lotti from his office at University of Rome “G.Marconi” to Africa Vitiligo Conference in Lagos, to all Speakers, Chairs of the

- A.O George | UCH, IbadanConference in his capacity of Chair of VRF to congratulate on the activity of the organizer Ms. Ogo Maduewesi, and on

Vitiligo is generally considered to be an acquired skin the successful l in her efforts to improve the interaction of diseases with various degrees of pigment loss. The exact the African Vitiligo support organizations towards a cause is not known but there are many hypotheses. A common target: vitiligo patients quality of life popular one in the temperate counties improvement. Her efforts have been supported in recent These autoimmune diseases are extremely rare in Nigeria times by VRF, a non-profit foundation promoting fast-despite the high prevalence of vitiligo. They appear to be tracking research toward a cure for vitiligo, and many seen more regularly with American Blacks possibly because different activities like WVD, Biobank Vitiligo and dedicated of genetic dilution. Other causes need to be considered or e-publications.looked out for in Nigeria. It could be more practical from the point of treatment and prognosis to consider vitiligo as a clinical skin reaction

- D Parsad, Department of Dermatology, Venereology & pattern with many causes. Some etiological factors may be

Leprosy, Postgraduate Institute of Medical Education and commoner in some countries or geographical locations.

Research, Chandigarh, India.Occupational vitiligo is a term used for this clinical appearance when certain chemicals are identified as

Vitiligo is a progressive disorder in which the melanocytes in contactants in some industrial workers. Such chemicals and

the affected skin are selectively destroyed. The prevalence related ones are present in homes such as Phenolic

of vitiligo is 0.1 to 3 percent in different ethnic and racial derivatives (Dettol, Purit), Hydroquinone (Velvetone, Ambi

groups. Vitiligo has profound effect on quality of life of and Emily Millionaire creams) and mercury –containing

patients, many of whom feel distressed and stigmatized by germicidal soaps (HgI soap).

their condition. Focusing on enhancing self-esteem and Vitiligo in the elderly is more than a cosmetic nuisance.

improving quality of life in vitiligo patients should be an Endocrinopathies (Diabetes mellitus, thyroid diseases) and

important part of the management of vitiligo. various neoplasms have been associated. There is thus a

The development of effective treatment for vitiligo depends need t screen more extensively for associated underlying

on understanding the mechanisms of depigmentation and systemic diseases in this category of elderly patients.

repigmentation. The basic pathogenesis of vitiligo in Vitiligo in children appears to be another subset with

general, or for any of the putative subsets of vitiligo, is not segmental distribution being more common and with more

fully known although substantial strides have been made in spontaneous re pigmentation in patients

pathogenesis and the treatment of vitiligo. Since the etiopathogenesis of depigmentation in vitiligo is still obscure, the source of pigmentation in the repigmentating lesion and its stability is also not fully known. By Wanakee Hill, N.D. USA

There are two main goals of any vitiligo treatment; first is to Vitiligo sufferers who discover the name of the dreadful stop the arrest of further depigmentation and second is to disease that robs them of their natural skin color often seek a induce repigmentation. The first goal can only be archived “cure."fully if we could unravel the mechanisms underlying the To date, there is no "cure" for vitiligo. A cure means that a disappearance of melanocytes in vitiligo. If this can be method is available to rid every one of the millions of white-achieved repigmentation should be rather simple to spotted people of vitiligo. There is no such cure; however, accomplish with a combination of medical and/or surgical there are remedies, treatments and therapies that are treatment. Surgical management has evolved significantly potentially helpful to those with vitiligo. And yes, many and given a ray of hope in stable vitiligo people are healed completely of the malady, despite the However, there is lot of scope for improvement. So more dire predictions and lack of a cure.research should happen in this field so that our aim will shift Others often regain a substantial amount of pigment in from "any repigmentation" to "complete and normal most areas, with the bony areas of the body often taking the repigmentation" and we can achieve a scar less healing of longest to fully recover, and are therefore, sometimes those "bruised souls". The mechanistic aspects of abandoned before 100% re-pigmentation is achieved.melanocyte repopulation in vitiligo and of other factors that I've had vitiligo since I was a young child. I have researched


the disease for more than 30 years, or all of my adult life. My daughter inherited vitiligo from me. I've regained 70 to 90%

- A.O George | UCH, Ibadancolor in all of my white patches. I've made these strides with all-natural therapies and a very cleansing and healthful diet

Dermatattoo is an art which has been practiced globally for and lifestyle.

centuries. In the realm of medicine it can be used to My own research, as well as feedback from members of my

enhance facial beauty for example to insert eye brow where support group convinced me that vitiligo is a disease that

there has been a loss e.g. in hair losing conditions like responds best to nutrition -- inside and out.

alopecia areata or where eyeliners cannot be used because The spreading that once plagued my body and crops up

of poor vision or because of arthritis of the hands or tremor again, periodically, is under control through the power of

of the hands from neurological diseases and to insert a nutrition, herbology, homeopathy, sunshine and my

nipple after surgical mastectomy for breast cancers. regimen that includes topical herbals.

Cosmetic masking of facial lesions has been achieved with powders.

Simple dietary changes to improve digestion are potentially beneficial to those with vitiligo. Apple cider vinegar just

However this may be affected by smearing /smudging from before meals, for example, improves digestion and nutrient

very oily skin. Such masking may not be easy to apply where absorption, which are shown deficient in those with viitligo.

there is a need to rush out in some emergencies. Swimming Removing gluten foods is one of the most important things

and very humid environment may affect the uniformity or for vitiligo sufferers. Avoiding wheat, oats, rye, barley and

the duration of the applied material.other gluten based foods potentially encourages the

Non facial locations like the arms and hands present system to heal, allowing color to return.

practical challenges.Sunshine daily to potentially stimulate pigment in vitiligo spots and patches, is important to healing. Many fear the

Dermatattoo offers a modality of treatment for clinically sun, because we've been told to avoid sunshine. The result

stable vitiligo. There are challenges however. Black skin is a is vitamin D3 deficiency in those with vitiligo, as well as

wide spectrum of blackness. However a high percentage of robbing the body of the many healing powers of the sun.

black people fall into hues that would benefit from black and Stress reduction, exercise and a holistic approach to vitiligo,

brown tattoo pigments. Fortunately black (carbon) , brown emphasizing a balanced body, whole foods, whole

(hydrate of ferric oxide) and not needed in blacks, titanium supplements and wholesome living, are a good arsenal in

dioxide (white) are pigments which have not be found to the fight to rid my body of all vitiligo.

give allergic reactions in the world of tattooing.Vitiligo is a stubborn disease, but there is hope. Balancing

There are challenges and fears however –to prevent and the body, mind and spirit, inside and out, potentially leads

hope that non health related tattoo practitioners do not go to a healthful body that produces pigment in areas where

along to tattoo lesions from infective conditions like the melanocytes had gone completely dormant. There is no

Hansen's disease.cure for vitiligo; however, many who focus on nutrition and correcting imbalances in their bodies do heal.

- Dr Shehu Yusuf MSc ,FWACP, FAAD Vitiligo is a disorder where skin parts gradually lose pigment by the appearance of white lesions or ‘patches’.

- Dr Andrew Thompson, Practising Clinical Psychologist in the NHS and Reader in Clinical Psychology at the University The pigment loss can be gradual or dramatic and can die of Sheffield, UK away or begin again, spreading without warning. The

exact cause still remains mysterious. The goal of vitiligo therapy is to stop the spread of pigment loss and toreturn My aim today is to raise awareness of the potential impact of pigment to the lesions. Of recent, there are new topical skin conditions. Specifically, I wish to draw attention to the treatments such as antioxidants, tacrolimus and wider picture by talking about the social, psychological, and pimecrolimus, prostaglandin E, and vitamin D derivatives. cultural factors that play a part in adjustment but yet remain Excellent healing results can be achieved through relatively understudied. I will present some examples of the combination treatments. In addition, new and experimental psychosocial impact of living with the highly visible skin therapies, such as narrow-band ult raviolet B condition vitiligo from interviews with people living with the microphototherapy (NB-UVB), narrow-band ultraviolet B condition. The second part of the talk will describe what we excimer laser and monochromatic excimer light are know about the effectiveness of psychological treatments available for the treatment of the disease. developed to alleviate distress associated with skin

conditions. I will briefly present some of the findings from a Despite this recent advance in the treatment of vitiligo, most study that tested self-help to improve social confidence, of these forms of treatments are not available in Nigeria. It is which was conducted in the UK with members of the UK worth noting that treatment of vitiligo is expensive and time vitiligo Society. consuming and so, not many patients can afford the I will conclude by advertising a specific workshop and study treatment. Most of the drugs mentioned are not readily supported by VITSAF, and members of The Nigerian available in Nigerian pharmacy shops. Myth, ignorance and Association of Dermatologists, and the University of misinformation about the condition contribute to the fewer Sheffield, to be held in Lagos in early 2013 to extend this cases seen in dermatology clinics.work.

Vitiligo – Possible role for dermatattoo for clinically stable lesions

What’s new in the treatment of Vitiligo

Supporting the psychosocial needs of people living with skin conditions – Recognising the role of . psychological, social, and cultural factors


If you are interested in participating please contact vitsaf.

The study has the approval of the Department of Psychology ethics committee at the University of

There will be two parts to the study. Sheffield UK. The study is being conducted in collaboration with the Nigerian Vitiligo Support and

We will ask you to talk freely about your personal Awareness Foundation (VITSAF).experience of living with vitiligo. This section will be recorded using a digital voice recorder. Further Information

We will show you a self-help leaflet and ask your Contact Ogo opinions about it. We will also ask you if you have any [email protected], [email protected] towards improving it. We are 0702 516 5280interested to know if you think that it would be a Facebook – VITSAFng, Skype – vitsaf1, Twitter - vitsafhelpful thing to have access to in Nigeria.


THE NIGERIAN EXPERIENCE OF LIVING WITH VITILIGO:

developing self-help - we need people to participate in one to one interviews and a self-help workshop.We are interested in finding out more about how Nigerians experience living with vitiligo. To do this we would like to interview people who are living with the condition.

Annual General Skin Health Enlightenment.

AFRICA VITILIGO CONFERENCE 2012

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Transcript of AFRICA VITILIGO CONFERENCE 2012