Adrienne Ntankeu was born in April 1978 in Yaoundé, Cameroon. When she was 5, she was sent to France in her family because of her albinism. She had a tough childhood: she went through continuous humiliation and ill-treatment. She had help from social services at the age of 19. They gave her the opportunity to go back to Cameroon for 6 months to get to know her own family. She then started to understand how hard life is for Albinos in Africa. In 2011, she founded the association ANIDA because she was outraged by albinos massacres in Africa.
“I decided to fight – with the help of other associations – to help defend these people. I am just one in a million but I want to help my brothers and sisters all around the globe. I want to change mentalities and tell ignorant people that being an albino is not a stigma.”
Chronique beauté noire : What does ANIDA means and what is the purpose of the association ? Who are its members ?
ANIDA : ANIDA means « Association Nationale et Internationale de Défense des Albinos » (National and international association for albinos rights). This non profit association has been created in order to fight against social and medical difficulties that albinos go through in Africa.
There is not a lot of members in the association for the moment because the association is still recent : the association is composed of the chairwoman, Adrienne Ntankeu and Miss Mélodie Appel, artistic director in charge of the communication. We also work with partners (associations, celebrities…), volunteers (photographers, producers, albino models…) who help us a lot and subscribers helps us go ahead whatever it takes.
Chronique beauté noire : is it correct to define albinism as a disease above all ? What are the symptoms and do all albinos automatically suffer from the same symptoms ?
ANIDA : actually, this is not just one but many genetic diseases gathered under the name of “albinism”. These diseases cause many symptoms and the most obvious is the absence of melanin, which causes a decrease in eye, hair and skin pigmentation. There are three types of albinism :
- Ocular albinism : except the eyes, skin and hair pigmentation is normal.
- Cutaneous albinism : in this case you have white patches on your skin and white strands of hair.
- Oculo-cutaneous albinism : there is a total or partial absence of pigmentation on the skin, hair and eyes.
Oculo-cutaneous albinism is among the most frequent genetic skin trouble in Human as well as in animals.
The main problems of this disease affect the eyes and skin. Skin is extremely sensitive to sun exposure, highly prone to skin cancer and can be easily infected if treated incautiously. Vision is far less accurate and eyes become photophobic and are affected with nystagmus (i.e. involuntary eye movements) and myopia.
People who have albinism suffer from the above mentioned handicaps but at different levels (for instance some people are more seriously affected with myopia or nystagmus.)
Other problems can be related to albinism like being deaf or immune deficiency.
Chronique beauté noire : It is said that Africa ist the continent that ist he most affected by albinism with around 1 albinos per 4,000 births whereas it is only estimated at 1 per 20,000 in the rest oft he world. Is there a reason fort that?
ANIDA : Some people say that inbreeding is responsible for that : on the one hand because there is no mix between the many african ethnies and on the other hand social rejection of Albinos since decades prevents them from having a “sane” partner and to “drawn” the genes of this disease.
Chronique beauté noire : Generally speaking, Albinos in Africa are endangered. What are the most dangerous countries for albino ?
ANIDA : First off, let us remind reader of the dangers encountered by albinos.
The above mentioned physical disabilities make it hard for albinos in Africa to be properly integrated in the society. On the one hand, the sunny weather is so dangerous for albino’s health that they cannot do any activity that is supposed to be exposed to sunrays. On the other hand, serious and incurable myopia prevents them from having jobs that require having accurate vision.
The integration of albinos in the society also depends on cultures and beliefs. In many African societies, albinos are considered as cursed. Most of them are left aside and persecuted. This is hard to get rid of these beliefs, fear and superstitions. There are many ways to secretly kill albino children and these methods are used by parents with the consent of the society.
Since a couple of year, beliefs have been spread by wizards that Albinos do have magic powers and therefore they are hunted, killed and cut in pieces in order to prepare magic potions that are sold to fishers, miners and politicians. These potions are supposed to bring luck.
Albino aggressions have started in Western Tanzania around 2007 and then spread to border countries like Burundi or Kenya. Many albinos cannot got ot work, study or cultivate their fields because they are scared of hunters.
Chronique beauté noire : Is there a difference whether you live in rural areas or in town ?
Yes there is a difference whether we live in rural areas or in town. In town, awareness, access to information, to care, to NGOs and therefore to protection is easier.bIn rural areas, albinos are left alone with ignorance and fear. People are often poor and this is related to rejection due to ignorance. This is why in the last years, Albinos have moved more and more from rural areas to big towns.
Chronique beauté noire : According to you, how is it possible to undo the automatic association albino/belief ?
ANIDA : We have to fight against these beliefs that are deeply ancred in people’s mind since centuries by fighting ignorance and through awareness actions.
This is the main purpose of our Photography exhibition project between France and Africa, which will start on September, 28th 2012 at Maison de l’Afrique in Paris and then we will go to other big French towns and then we will be present in 6 African capital cities.
In France, we aim at raising people’s awareness about this disease, disabilities, social and medical difficulties that it causes to albinos in Africa and raise funds as well as material gifts. In Africa, our purpose is to have people see albinism differently by giving them another point of view and informing them of the medical issues of this disease. We would also like to help Albinos to have another perception of themselves, to raise their awareness about the fact that they have to protect their health and help them by giving the materials that we would have collected in France.
Chronique beauté noire : Do all Albinos suffer from the same skin troubles even if they do not have same origins ?
ANIDA : They all come to earth with the same skin fragility due to the absence of melanin. The different levels of infections or skin cancers are not due to ethnicity but to climate and social position. For instance, a person who were born with a poor social background has less access to care and material protection that they need.
They are less informed of the what they should do and how they should protect their health. They have less access to education and therefore they may do choirs that supposed to be exposed to sun rays in order to make a living.
An Albino who were born in Africa under a very sunny weather will have worse skin problems than an Albino who were born in Europe under a temperate climate. An Albino who were born in a wealthier social background will have less difficulties to deal with their disease than those born in poor environments…
Chronique beauté noire : What type of cosmetic care do albinos need ? Is it harder to find appropriate products depending on the country we live in ? What creams are proscribed?
ANIDA : People with albinism have a very dryskin and the skin is highly sensitive to sun exposure. Therefore they need hypoallergenic and hydrating skincare products. They should avoid products who were not made for sensitive skin.
Chronique beauté noire : Your are going to make an exhibition about albinism in September. What is your message?
ANIDA : The exhibition will be launched on September, 28th 2012 at Maison de l’Afrique in Paris.
There will be an inauguration on September, 28th. Then there will be a conference about albinism around the globe and the social and medical difficulties caused by this disease.
Products will be sold during the exhibition in order to collect funds. To that end, photographies will be exhibited and auctioned. We wish that a lot of people and media bepresent at the opening during the 3 weeks in Paris in order to make as much people aware as possible and to get financial support, French and international sponsors and to have material gifts. Do not hesitate to talk aboutour struggle and to come support us on September 28th!!
We need you to change mentalities.
More information on : www.anida.fr