Why are some people black and others white? The booklet “Albinism – just a gene” by Gudrun A. Rappold highlights the genetic principles of pigmentation in people, including those with albinism, a recessive pigment condition resulting in very light skin, as well as lighter coloured eyes.
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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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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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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Prof. Dr. rer.nat, 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.
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.
English, German
French, Portuguese
Arabic
Chichewa
Hausa
Fon
Luganda
Amharic
Zulu
Kinyaruanda
Swahili
Spanish
Secretary
Kirundi
Kirundi
Portuguese
Wolof
Igbo
Tumbuka
Xhosa
Swahili (Congo)
Shona
Yoruba
We are honored to have Timothy Brown Mwenechali and Morton Juma who created a theme song inspired by the book Albinism - Just a Gene.
Albinism Just a Gene
Timothy Brown Mwenechali & Morton Juma
Learn more about the song
Singer and Song Writer
Singer and Song Writer
I was born on 5 December 2002 as the fourth child in a family of six. I have one sister and four brothers and was raised by a single mother after my father left shortly after my birth. I am the only family member with albinism.
When I was 11 years old, I survived a violent attack linked to ritualistic practices. A member of my extended family took me to a forest where three other men were waiting. They attempted to kill me by strangling me and holding knives to my throat. During the attack, which caused deep bleeding wounds, I managed to break free and run for my life. I reached a path where I was found and rescued. Two of the men involved were later arrested and imprisoned. I was left with deep scars on my neck and shoulder as a result of the attack.
After completing primary school in Karonga, I attended Mzuzu International Academy for secondary school. I began my musical journey in 2010, influenced by my family members who are all musicians. My role model is Eminem. I perform under the stage name M. Spark and create music in the genres of hip hop, trap, amapiano and afro music.
I was born on 9 April 2000, the youngest of two sons in my family. My brother and I both have albinism. My mother passed away in 2003 and my father left shortly afterwards, so I was raised by my grandmother.
After completing secondary school, I enrolled at Ngala Community College to study motorcycle repair. I completed Level 1 of the programme, but later had to quit due to financial difficulties.
My journey in music began in 2010 when I watched the Aleluya Band perform at the opening of the Karonga Diocese. This inspired me to pursue music. I later joined the Tantufy Sunday School Choir, where I learnt about music and developed my skills. I perform under the stage names Blottiyo or BT, and music has become an important part of my life and personal development.
Albinism Just a Gene
Timothy Brown Mwenechali & Morton Juma
Directed by Bridget Mwale; produced by 1I; shot by Heaven Mark
Sometimes I wonder why you get amazed how I am,
Your mind pushed you so far away to think evil upon my life
You have turned my real name because of my appearance
You don't know what's going on. Albinism is all about.
You take me as money, you don't take me as man
Witch doctors deceived you, they said my bones are money
My Daddy, I'm your child, I am really your blood son
Don't think my mother went outside, it's just a genetic condition
I need support from you,
I need a love from you,
I need a care from you
I true am human.
Ooooh, it's just a gene. Albinism is just a gene,
My condition is just normal, biologically it's nature.
You can be the greatest, you can be the best,
You can be the King Kong banging on your chest
You can win the world, you can win the war
You can talk to God, go bang on his door
You can through your hands up high.
You can be mindful, you can be a priest
You can move mountains, you can break the rocks
You can break the rooocks
Be students
Be leaders
Be believers
Be preachers
Be astronauts
Be champions
Be mindful
Be teachers
Dedicate yourself so you can fight for your Rights.
Oh, just a gene. Albinism is just a gene
my condition is just normal biologically, is nature.
The first exhibition was held in Karonga, Malawi. We had community members, religious leaders, and government officials in attendance.
