Albinism - Just a gene

Forewords

Muluka-Anne Miti-Drummond
UN Independent Expert on the enjoyment of rights by persons with albinism.
It is sometimes said that ignorance is bliss. Unfortunately, that does not always ring true. Ignorance can lead to wrong beliefs, superstitions, and myths. And in turn, such wrong beliefs, superstitions, and myths - particularly about people who are different from us - can lead us to irrationally hating, admiring, or pitying people whom we know absolutely nothing about. Myths and superstitions can be dehumanising. This is something that we have seen in relation to people with albinism.
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Ikponsowa Ero
Lawyer, Human Rights Advocate, and First United Nations Independent Expert on Albinisim
When I was born in Nigeria, my parents were very surprised to see me. My colour was in stark contrast to their rich brown skin and black hair. They were quickly informed by the doctor who helped to give birth to me, that I probably had albinism. The doctor wrote in my first hospital card: “albino?” You see, even the doctor herself questioned whether I had albinism.
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Eva Luise Köhler
Patron of the Alliance of Chronic Rare Diseases (ACHSE) and Chairwoman of the Board of Trustees of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases
I was deeply moved by this book, written by Professor Rappold, as I have been dealing with the topic of albinism in Africa for many years. I am, like Professor Rappold, repeatedly shocked by the futility of violence – particularly the mutilation and murder of children and adults with albinism in the southern countries of Africa. It is hard to believe that superstition has spread so widely. Even today, babies born with albinism are murdered and hundreds of people cannot live in safety – all because of a genetic defect they are born with.
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Gudrun Anna Rappold

Prof. Dr. rer.nat, Seniorprofessor, em. Director Department of Human Molecular Genetics, Institute of Human Genetics, University of Heidelberg

This is an international friendship project. It was triggered while travelling with my choir “Imbongi – Voices for Africa” in Eswatini (Swaziland) and talking to students at the skills training center in eSitjeni. There, I heard that newborns with albinism have “an association to the water” – meaning they get frequently drowned. In other regions of Africa, people with albinism get hunted, mutilated, or killed. These people are often children. The epicentre of violence against people with albinism is in Tanzania and Kenya, where the belief in spirits and witchcraft is deeply rooted. Witchdoctors claim that the body parts of people with albinism have magic powers and sell these, disassembled into small parts, as lucky amulets. Many hundreds of people have already been killed and countless people have been attacked and had limbs cut off.
Science contra superstition. I am convinced that scientific education has to begin at school. Albinism is a recessive pigment disorder, a genetic disorder, and genetics follows clear-cut rules. There is no superstition involved. All this provided the impetus to set up this small booklet for kids and young people.
I wrote a first draft of the text while staying for a week at the Institute of Wendy Bickmore in Edinburgh, Scotland. Rolf Sprengel in Heidelberg connected me with authors Jill und Giulia Enders, who, in turn, established the contact with Viola Kup, a communication designer living in Nairobi, Kenya. All the wonderful illustrations in this booklet were done by Viola. She was excited about the project from the very beginning and took time off for it, despite having just given birth to a daughter and being a working mother at the UN. Without her, the text would lack liveliness. Viola’s friend Sam Achola, a programmer, offered to set up an interactive website. This will allow us to also distribute the text via the Internet. We also thank Dawn Lee in Singapore, Susanne Loeben in Berlin, Benoit Arveiler in Bordeaux and Patricia Lund in Coventry for helpful comments.
All the translators who support this project with passion are thanked in advance with great gratitude. I was only the snowball that set the avalanche in motion.

Meet our translators

The text will be translated in several languages of Sub-saharan countries where people with albinism are threatened. All the translators who already supported or will still support this project with passion are thanked in advance with great gratitude.