Meeting report: 1st International Workshop on Oculocutaneous Albinism in Subsaharian Africa

1st International Workshop on Oculocutaneous Albinism in Subsaharian Africa

1st International Workshop on Oculocutaneous Albinism in Subsaharian Africa

Last week, on 24-25 July, the 1st International Workshop on Oculocutaneous Albinism in Subsaharian Africa took place at the Sawa hotel, in Douala, the economic capital of Cameroon. This meeting was organized by Robert Aquaron (Univ. Aix-Marseille, France), Albert Mouelle (Univ. Douala, Cameroon) and Charlotte Baker (Lancaster Univ., UK) and counted with the participation of several additional scientists from different countries, including: Patricia Lund, Benoît Arveiler, Alain Taïeb, Alain Froment, Pierre Bey, Robyn Kerr, Jennifer Kromberg, Martial Zannou and Lluís Montoliu. The meeting was co-sponsored by Lancaster University, Wellcome-Trust, Avene/Pierre-Fabre laboratory and the European Society for Pigment Cell Research (ESPCR), among many other government (Yvonne Matuturu, from UNESCO, Burundi, several ministries in Cameroon) and non-government institutions (Jon Beale, Standing Voice). The meeting was attended by more than 120 participants coming from several countries in Africa, including: Cameroon, Burundi, Benin, Ivory Coast, Mali, Malawi, Zambia, South Africa, Niger, Nigeria and Republic of the Congo.

From left to right: Robert Aquaron, Charlotte Baker, the Rector of the University of Douala, Albert Mouelle and the President of ASMODISA

From left to right: Robert Aquaron, Charlotte Baker, the Rector of the University of Douala, Albert Mouelle and the President of ASMODISA

This meeting was in many ways unique and exceptionally successful and the organizers must be praised for having managed in bringing to Cameroon many different people with a common interest on albinism in Africa. Basic researchers, clinicians, anthropologists, dermatologists, ophthalmologists, experts in human rights, professors at universities, members of associations and organizations in support of people with albinism, advocating for albinism, people with albinism themselves, students and public in general gathered in Douala to discuss both scientific and social aspects of albinism, particularly focused into topics that affect people with albinism in Africa. Albinism is the same genetic condition present in Europe and Africa, and everywhere else in the world. However, whereas people with albinism in Europe can concentrate their efforts in the visual handicapping features of albinism, while protecting their skin from the sun with adequate creams and clothes, the absence of these simple materials in Africa makes these individual unfortunately and unnecessarily prone to develop skin cancer, and with fatal consequences if tumors are not treated in time. Hence, the dermatological aspects of oculocutaneous albinism, mainly OCA2, the commonest form of albinism in Africa, become extraordinarily relevant and, consequently, were the subject of many presentations and discussions throughout this workshop in Douala.

Two participants with oculocutaneous (OCA) albinism attending the conference in Douala. The person on the left is OCA2, the person on the right is OCA1.

Two participants with oculocutaneous (OCA) albinism attending the conference in Douala. The person on the left is OCA2, the person on the right is OCA1.

Raising positive awareness and advocating for people with albinism was a common aim for all organizations attending this workshop in Douala. ALBA and Genespoir, the Spanish and French associations in support of people with albinism, contributed with copies of the book on “Albinism. One genetic condition: two realities, Spain and Senegal”, originally published in Spanish by ALBA in 2009 and later translated to French by Genespoir in 2012. French copies of this book with many testimonials by people with albinism from both Europe and Africa were distributed among representative delegates from African associations in support of people with albinism. Two flyers, sponsored by ESPCR, dealing with the workshop and with oculocutaneous albinism type 2, OCA2, were distributed to all the participants.

Robert Aquaron distributing sun protection cream among participants (click on image for VIDEO)

Robert Aquaron distributing sun protection cream among participants (click on image for VIDEO)

The meeting closed with a Gala Dinner where sun protection creams (50+ SPF) generously donated by Avene/Pierre-Fabre laboratory, were distributed among people with albinism participating in this conference and the corresponding associations representing them. At this Gala Dinner we could enjoy performances by several groups with people with albinism sharing their talent dancing, singing or in a fantastic mannequin parade where a local fashion designer is using them to present his creations. Among these performances there was one outstanding, by John Chiti, from Zambia, a gifted music composer that uses the language of music and his rhythmic songs to talk about his albinism and albinism in general, advocating for this genetic condition and increasing positive awareness among the society.

Dances at the Gala Dinner of the Albinism Conference in Douala (click on image for VIDEO)

Dances at the Gala Dinner of the Albinism Conference in Douala (click on image for VIDEO)

Performance of John Chiti, music composer from Zambia, at the Gala Dinner of the Albinism Conference in Douala (click on image for VIDEO)

Performance of John Chiti, music composer from Zambia, at the Gala Dinner of the Albinism Conference in Douala (click on image for VIDEO)

In summary, this was a splendid conference where we all shared our progress into the understanding and treatment of albinism, where we could discuss, face to face, directly with people with albinism in Africa and their associations, listening to their needs and their requests for help and support. This should be the first of many additional workshops to come, in Africa, to keep this momentum and push forward the awareness on albinism in this continent where the priorities and requirements for life are somehow different from what we are used to hear in Europe. Attending a meeting in Africa is always a moving and very emotional experience, where you are directly confronted with the problems and the difficulties one usually reads in the books and journals, or watches on TV. But being there is something else. There is a saying that goes: “when you leave Africa, Africa doesn’t leave you any more”. Robert Aquaron told me about it some years ago, when I still didn’t have the chance to visit Africa. Now, after coming back from Cameroon I can only say: so true!.

Robert Aquaron near Mount Cameroon

Robert Aquaron near Mount Cameroon

Many thanks are due to Robert Aquaron and the rest of his colleagues for having promoted this conference on albinism in Africa.
Lluis Montoliu

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