AFRICA VITILIGO CONFERENCE 2012

AFRICA LAGOS 2012

AFRICA VITILIGO CONFERENCE (STAKEHOLDERS CONFERENCE)

P O W E R E D B Y:

E N D O R S E D B Y:

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

OCTOBER 2012 LAGOS STATE MINISTRY OF HEALTH

W Photo Courtesy: Vitsaf

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AFRICA LAGOS 2012

CONTENTS

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

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7 Vitiligo patient-driven groups in Africa Senegal Vitiligo Support, Senegal Vitiligo in Senegal is a story because a great religious leader had the revered religious leader Sheikh Ahmadou Bamba murid. Empirical belief and according to all the people who have vitiligo are men of paradise and are good people.

That is why in our daily lives in our families, our friends and our surroundings we are accepted without discrimination, but reality is different for the social inclusion of people living with vitiligo sometimes people tell me that the phone Appears when they submit a resume without a photo are called for interview, but often they are not recruited, when they deposit a photo, they are not called for interview.

Therefore the major problem here is social exclusion because vitiligo is not accepted socially and even when we try to find a solution by traditional medicine, people ask you why you want to remove it, you have something that you do not know, vitiligo has no medicine at the legal, doctors say there is no remedy what they do is give us some sunscreen ointments.

Our ambition now is to work to gather all the people living with vitiligo in Senegal first to help each other and share our convictions firmly then work for the development of vitiligo national network in Africa and between continents for recognition of the International Day of vitiligo – World Vitiligo Day – June 25.

We believe that we can achieve by relying primarily on our personal convictions sources of motivation can help us to achieve our lofty goals Coordinator – Vitiligo Senegal Name - Gueye Doudou Facebook - vitiligo.sunugal Email: vitiligosenegal@yahoo.fr

AFRICA VITILIGO CONFERENCE (STAKEHOLDERS CONFERENCE)

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.

VISOKE Group Meetings.

VISOKE is a free membership group which meets on quarterly basis in the capital city. The group offers favorable social support in various ways: 1. It provides an opportunity to members to express their fears and uncertainties to close friends during the meetings.

2. It provides a chance to every member to relate with the other patient who has learnt to bear with his/her condition with patience, hope and dignity.

3. It provides room to meet the spiritual component of our lives together. When we believe in God, we pray and trust in Him and we find the strength to face the future with hope even if we still have a long way to go.

When you leave the door steps of your house either for work or any other duty, the stares begin with every eye focused on the pale patches left on your skin. But anyway, what would we expect since all they understand is the myths that the community has rammed in their heads. They will talk of any wild thing like... He must have crossed where the water used for bathing the twins was thrown...Her grandparents are annoyed with her birth so the wrath of the ancestors are working on her.., or it is a mystical factor “chira”. Others will talk about how you got burn with some hot water by your spouse.

Majority of people talk about skin cancer or the leprosy. All these explain very well the level of ignorance in both the lay public and the patients in Kenya.

Together we shall win!

Founder/Executive Director James Laban Facebook – Vitiligans in Kenya Email – jemolab420@yahoo.com

Kenya Vitiligo Society Of Kenya 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 from this NGO based in Nigeria. VISOKE is still very proud to be enjoying cordial working relations with VITSAF. VISOKE has got its main objective focused on awareness creation .It looks forward to achieving this through 1. Staging road walks, plays and drama.

2. Publishing booklets, fliers, and brochures 3. Having public forums with schools, churches etc

Ethiopia Vitiligo Support, Ethiopia In Ethiopia, majority of people does not know what vitiligo is and its source. The society associates the cause of vitiligo to curse, anger, sin, and punishment from God. Efforts on awareness of vitiligo are less made in the society. As far as my understanding and observation is concerned, adequate mode of treatment by specialized doctors and trainings are not rendered to society and to those persons with vitiligo.

As matter of fact, no distinction is made between albinism

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AFRICA VITILIGO CONFERENCE (STAKEHOLDERS CONFERENCE)

and vitiligo cases; both vitiligo and albinism skin disorders 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.

I am Tamru Kedir a blind and vitiligo person born in Ethiopia on December 25 1983 EC. I lost my sight when I was two-years-old due to retina damage. My family tried nothing to save my eye-vision through modern medical treatment. Rather, they tried to heal me through traditional home-made drugs. However, the traditional drugs gave me no solution in healing and returning back my vision.

In addition to blindness, I faced with another skin disorder known as vitiligo which depigments my skin to whitish color.

I am studying masters of human rights in Addis Ababa University while creating vitiligo awareness in my little way.

Subsequent to completing masters of human rights degree, it is my zeal to work fully on vitiligo cause especially on human rights issues to raise advocate for the vitiligo.

Coordinator - Vitiligo Support Ethiopia Name - Tamru Kedir Email – miracletam@gmail.com

Uganda Vitiligo Support Group, Uganda In Africa, Uganda particularly people with VITILIGO have not been given much attention by the Health Sector, and this has caused them to have a continued state of rejection, shame, embarrassment and inferiority. Most of them the attention they have received has been on personal ground. i.e. People who have felt sympathetic to them and given in a hand.

VITILIGO is very rampant these days; this is very serious case which needs immediate attention by the Health Sector. It's more frustrating if it gets one in lower and middle classes and higher institution as it may lead to someone losing his /her peer group. It's also very frustrating in years of marriage bracket, this is one of the most trying periods for such victims, because it takes a man or a woman with a high intellectual capacity and state of integrity to marry or get married to a VITILIGO victim.

There are many people, in our country particularly in the village who are victims of VITILIGO whose family or relatives have rejected or ignored them as far as denying them school. I have personally heard of children who have VITILIGO who fear to go school because their fellow friends tease them.

I am Vivian Najjuka from Uganda. I have lived with VITILIGO for seven years now. I send my very sincere appreciation to the Vitiligo Support and Awareness Foundation Group in Nigeria, which trying all possible ways to advocate for us Vitiligo victims at both National and

International scene, may God bless you richly.

My Experience with Vitiligo: Everything was perfect in my life until I was diagnosed with VITILIGO. It was around June 2004 when I was finalizing with my first Degree in Library and Information Science at Makerere University, Kampala – Uganda, when I faced this Vitiligo trauma. It was really a year of great life experience and challenges. My skin from nowhere started to react, changing from its original birth color uncontrollably especially in the focal parts of my body such as the; face, mouth, hair, arms and legs. This caused me a lot of stress as; I had never seen or heard of this type of skin patches. What even caused me more stress is when I visited skin doctors who could not even know the name of my problem. It was not until I visited the Internet and did my own search that I came to know the name of this skin patches. It was scientifically termed as VITILIGO. This information from the Internet helped me a lot too, because it explored to me many other cases of Vitiligo victims and suggested available treatments. However the treatments mentioned on the Internet also happened to be very far countries to mention but a few; United Kingdom, China, India, America and Israel.

At the same time I was also trying with herbals from various sources, which I also withdrew after some time because of the supernatural powers which were attached to them. After 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 very keenly and vigilant to see if there could be other people of same or similar problem. The few victims I saw were mostly men. I then wondered how this misfortune could come to me more as a woman, it was very devastating.

I started facing serious challenges whenever I would meet people and especially my friends who used to ask me • • •

• •

What exactly was going on in my life and particularly my skin, Some could just make fun of me and say; Vivian that is AIDS and it has started on you in the face, Then others could make comments such as; Vivian that skin problem has no medicine and cure and it will not get healed.

Others would ask me; If I think I will ever get married at all?

I will also never forget one person who mocked me and said I was a good sacrifice.

All such comments from different people and sources distressed me a lot, to the extent that I thought of committing suicide. I then regretted the day I was born. In addition to that, some of my campus friends started to reject me .They stopped calling me for any outing even when I wanted to hang out with them, but I thank God for them.

This is because, later on God connected me to new friends who have loved and cared for me, may be God wanted me to first have that intimacy with Him, as an individual and not in a group.

God has strengthened me and today I am creating Vitiligo awareness in the University where I lecture and starting a Vitiligo Support Group in Uganda.

9 Co-ordinator Name - Vivian Najjuka Facebook - Visugu Uganda Email - visugu2012@gmail.com

Ghana VITSAF , Ghana I am a model and an event manager. I have been living with vitiligo for 9 years.Working with VITSAF for Vitiligo awareness in Ghana and all their set goals and objectives.

Gifty Afezuke - VITSAF Ghana Facebook - Vitiligo Support Ghana email - vitsafghana@vitsaf.org

Namibia Vitiligo, Namibia Having Vitiligo is a very traumatic condition, most of us the Vitiligo Patients often get demoralized by the way we are treated by the rest of the society, mostly Vitiligo Patients cut themselves off socially and confine themselves to the four walls of their homes.

People with Vitiligo face hurdles in education and employment too. Even if only one person in a family has Vitiligo, the social stigma affects all the other members. I appeal to people not to subject Vitiligo affected persons to embarrassment by starring at them or discriminating against them as their self – esteem falls steeply and they develop sense of being rejected.

I had Vitiligo when I was 23 years and I find no cure. I had several consultations with professional dermatologists and their response is no cure. It came to my attention as a person suffering by the disease I did a little research on the internet on how to find cure but I find none. Though not all those who suffer from Vitiligo take the extreme to come out and talk about it. As it has no cure neither treatment, nor it has no clear picture on what causes it. The stigma is attached to Vitiligo Patients and I am hereby initiating the campaign that Vitiligo is not disease and it is not contagious. I am working on running a public campaign on Vitiligo together with my fellow patients as well as the family who are affected.

I hope and believe it will help improve the quality of life of people with Vitiligo in Namibia and their families and indeed the community to understand better on this skin disorder.

Co-ordinator, Vitiligo Namibia Name – Saara Loide Nangula Facebook – Vitiligo Namibia Email - saaraloide@live.com

AFRICA VITILIGO CONFERENCE (STAKEHOLDERS CONFERENCE)

South Africa Beyond Vitilgo South Africa 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 mother, Gaone recognizes South Africa as home, and has become the voice of the vitiligo community in South Africa.

When Gaone was 14, her vitiligo mysteriously disappeared only to reappear when she was in her second year at the University.

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 to the taunts of both children and adults alike. Beyond Vitiligo is a call to the community to live beyond the disease and to encourage individuals to take vitiligo for exactly what it is; a disease with natural causes, and not a curse.

Mission: Fighting stigma on Vitiligo in South Africa communities and beyond throughcreating Awareness, Support, Viducating and Acceptance.

Vision: To eradicate the stigma on Vitiligo in South African communities and beyond Organisation Overview Beyond Vitiligo is an organisation established in 2011 in a bid to fight stigma on Vitiligo inSouth African communities and beyond. The organisation was found and coined by GaonePetronella Tlhong This organisation was established through life experience of living with Vitiligo to assistthose with Vitiligo and those affected to accept this skin condition which is associated withsevere emotional trauma. It has been discovered that in the community people with Vitiligo are looked down upon and isolated by a community which lack knowledge of the condition.

BV is a registered Non-Profit organisation with six directors who make it possiblefor the organisation to realise their mission. it’s afamily made up of people living with Vitiligo and those affect with Vitiligo. We see beyond the skin colour towards acceptance of the skin condition.

Founder – Beyond Vitiligo Name - Gaone Petronella Tihong Facebook – BeyondvitiligoSA Email - gaone@beyondvitiligo.org Website - www.beyondvitiligo.org

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AFRICA VITILIGO CONFERENCE (STAKEHOLDERS CONFERENCE)

ABSTRACTS PROF.LOTTI'S VIDEO –AFRICA VITILIGO CONFERENCE, OCT. 18-19, 2012 - Prof.Torello Lotti | University of Rome “G.Marconi” 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 Conference in his capacity of Chair of VRF to congratulate on the activity of the organizer Ms. Ogo Maduewesi, and on the successful l in her efforts to improve the interaction of the African Vitiligo support organizations towards a common target: vitiligo patients quality of life improvement. Her efforts have been supported in recent times by VRF, a non-profit foundation promoting fasttracking research toward a cure for vitiligo, and many different activities like WVD, Biobank Vitiligo and dedicated e-publications.

Holistic Management of Vitiligo: Exploring a new horizon - D Parsad, Department of Dermatology, Venereology & Leprosy, Postgraduate Institute of Medical Education and Research, Chandigarh, India.

Vitiligo is a progressive disorder in which the melanocytes in the affected skin are selectively destroyed. The prevalence of vitiligo is 0.1 to 3 percent in different ethnic and racial groups. Vitiligo has profound effect on quality of life of patients, many of whom feel distressed and stigmatized by their condition. Focusing on enhancing self-esteem and improving quality of life in vitiligo patients should be an important part of the management of vitiligo.

The development of effective treatment for vitiligo depends on understanding the mechanisms of depigmentation and repigmentation. The basic pathogenesis of vitiligo in general, or for any of the putative subsets of vitiligo, is not fully known although substantial strides have been made in 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.

There are two main goals of any vitiligo treatment; first is to stop the arrest of further depigmentation and second is to induce repigmentation. The first goal can only be archived fully if we could unravel the mechanisms underlying the disappearance of melanocytes in vitiligo. If this can be achieved repigmentation should be rather simple to accomplish with a combination of medical and/or surgical treatment. Surgical management has evolved significantly and given a ray of hope in stable vitiligo However, there is lot of scope for improvement. So more research should happen in this field so that our aim will shift from "any repigmentation" to "complete and normal repigmentation" and we can achieve a scar less healing of those "bruised souls". The mechanistic aspects of melanocyte repopulation in vitiligo and of other factors that

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.

In this talk I would be presenting an overview of our work related to clinical and basic research and our journey over last 20 years to add colours to vitiligo patients lives.

VITILIGO-etiological factors, treatment modalities and prognosis - A.O George | UCH, Ibadan Vitiligo is generally considered to be an acquired skin diseases with various degrees of pigment loss. The exact cause is not known but there are many hypotheses. A popular one in the temperate counties These autoimmune diseases are extremely rare in Nigeria despite the high prevalence of vitiligo. They appear to be seen more regularly with American Blacks possibly because of genetic dilution. Other causes need to be considered or 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 pattern with many causes. Some etiological factors may be commoner in some countries or geographical locations.

Occupational vitiligo is a term used for this clinical appearance when certain chemicals are identified as contactants in some industrial workers. Such chemicals and related ones are present in homes such as Phenolic derivatives (Dettol, Purit), Hydroquinone (Velvetone, Ambi and Emily Millionaire creams) and mercury –containing germicidal soaps (HgI soap).

Vitiligo in the elderly is more than a cosmetic nuisance.

Endocrinopathies (Diabetes mellitus, thyroid diseases) and various neoplasms have been associated. There is thus a need t screen more extensively for associated underlying systemic diseases in this category of elderly patients.

Vitiligo in children appears to be another subset with segmental distribution being more common and with more spontaneous re pigmentation in patients

Nutritional Approach to Vitiligo & Other Autoimmune Diseases By Wanakee Hill, N.D. USA Vitiligo sufferers who discover the name of the dreadful disease that robs them of their natural skin color often seek a “cure."

To date, there is no "cure" for vitiligo. A cure means that a method is available to rid every one of the millions of whitespotted people of vitiligo. There is no such cure; however, there are remedies, treatments and therapies that are potentially helpful to those with vitiligo. And yes, many people are healed completely of the malady, despite the dire predictions and lack of a cure.

Others often regain a substantial amount of pigment in most areas, with the bony areas of the body often taking the longest to fully recover, and are therefore, sometimes abandoned before 100% re-pigmentation is achieved.

I've had vitiligo since I was a young child. I have researched

11 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% color in all of my white patches. I've made these strides with all-natural therapies and a very cleansing and healthful diet and lifestyle.

My own research, as well as feedback from members of my support group convinced me that vitiligo is a disease that responds best to nutrition -- inside and out.

The spreading that once plagued my body and crops up again, periodically, is under control through the power of nutrition, herbology, homeopathy, sunshine and my regimen that includes topical herbals.

Simple dietary changes to improve digestion are potentially beneficial to those with vitiligo. Apple cider vinegar just before meals, for example, improves digestion and nutrient absorption, which are shown deficient in those with viitligo.

Removing gluten foods is one of the most important things for vitiligo sufferers. Avoiding wheat, oats, rye, barley and other gluten based foods potentially encourages the system to heal, allowing color to return.

Sunshine daily to potentially stimulate pigment in vitiligo spots and patches, is important to healing. Many fear the sun, because we've been told to avoid sunshine. The result is vitamin D3 deficiency in those with vitiligo, as well as robbing the body of the many healing powers of the sun.

Stress reduction, exercise and a holistic approach to vitiligo, emphasizing a balanced body, whole foods, whole supplements and wholesome living, are a good arsenal in the fight to rid my body of all vitiligo.

Vitiligo is a stubborn disease, but there is hope. Balancing the body, mind and spirit, inside and out, potentially leads to a healthful body that produces pigment in areas where the melanocytes had gone completely dormant. There is no cure for vitiligo; however, many who focus on nutrition and correcting imbalances in their bodies do heal.

Supporting the psychosocial needs of people living with skin conditions – Recognising the role of . psychological, social, and cultural factors - Dr Andrew Thompson, Practising Clinical Psychologist in the NHS and Reader in Clinical Psychology at the University of Sheffield, UK My aim today is to raise awareness of the potential impact of skin conditions. Specifically, I wish to draw attention to the wider picture by talking about the social, psychological, and cultural factors that play a part in adjustment but yet remain relatively understudied. I will present some examples of the psychosocial impact of living with the highly visible skin condition vitiligo from interviews with people living with the condition. The second part of the talk will describe what we know about the effectiveness of psychological treatments developed to alleviate distress associated with skin conditions. I will briefly present some of the findings from a study that tested self-help to improve social confidence, which was conducted in the UK with members of the UK vitiligo Society.

I will conclude by advertising a specific workshop and study supported by VITSAF, and members of The Nigerian Association of Dermatologists, and the University of Sheffield, to be held in Lagos in early 2013 to extend this work.

AFRICA VITILIGO CONFERENCE (STAKEHOLDERS CONFERENCE)

Vitiligo – Possible role for dermatattoo for clinically stable lesions - A.O George | UCH, Ibadan Dermatattoo is an art which has been practiced globally for centuries. In the realm of medicine it can be used to enhance facial beauty for example to insert eye brow where there has been a loss e.g. in hair losing conditions like alopecia areata or where eyeliners cannot be used because of poor vision or because of arthritis of the hands or tremor of the hands from neurological diseases and to insert a nipple after surgical mastectomy for breast cancers.

Cosmetic masking of facial lesions has been achieved with powders.

However this may be affected by smearing /smudging from very oily skin. Such masking may not be easy to apply where there is a need to rush out in some emergencies. Swimming and very humid environment may affect the uniformity or the duration of the applied material.

Non facial locations like the arms and hands present practical challenges.

Dermatattoo offers a modality of treatment for clinically stable vitiligo. There are challenges however. Black skin is a wide spectrum of blackness. However a high percentage of black people fall into hues that would benefit from black and brown tattoo pigments. Fortunately black (carbon) , brown (hydrate of ferric oxide) and not needed in blacks, titanium dioxide (white) are pigments which have not be found to give allergic reactions in the world of tattooing.

There are challenges and fears however –to prevent and hope that non health related tattoo practitioners do not go along to tattoo lesions from infective conditions like Hansen's disease.

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

The pigment loss can be gradual or dramatic and can die 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 pigment to the lesions. Of recent, there are new topical treatments such as antioxidants, tacrolimus and pimecrolimus, prostaglandin E, and vitamin D derivatives.

Excellent healing results can be achieved through combination treatments. In addition, new and experimental t h e r a p i e s , s u c h a s n a r ro w - b a n d u l t r a v i o l e t B microphototherapy (NB-UVB), narrow-band ultraviolet B excimer laser and monochromatic excimer light are available for the treatment of the disease.

Despite this recent advance in the treatment of vitiligo, most of these forms of treatments are not available in Nigeria. It is worth noting that treatment of vitiligo is expensive and time consuming and so, not many patients can afford the treatment. Most of the drugs mentioned are not readily available in Nigerian pharmacy shops. Myth, ignorance and misinformation about the condition contribute to the fewer cases seen in dermatology clinics.

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AFRICA VITILIGO CONFERENCE (STAKEHOLDERS CONFERENCE)

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.

If you are interested in participating please contact vitsaf.

There will be two parts to the study.

We will ask you to talk freely about your personal experience of living with vitiligo. This section will be recorded using a digital voice recorder.

We will show you a self-help leaflet and ask your opinions about it. We will also ask you if you have any recommendations towards improving it. We are interested to know if you think that it would be a helpful thing to have access to in Nigeria.

The study has the approval of the Department of Psychology ethics committee at the University of Sheffield UK. The study is being conducted in collaboration with the Nigerian Vitiligo Support and Awareness Foundation (VITSAF).

Further Information Contact Ogo vitsupng@gmail.com, vitsaf@vitsaf.org 0702 516 5280 Facebook – VITSAFng, Skype – vitsaf1, Twitter - vitsaf

Annual General Skin Health Enlightenment.