Eva Luise Köhler

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

From Eva Luise Köhler

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. However, that the origin of this violence is in superstition strengthens my hope that early education can combat this and save affected people from this cruel fate in the future.

In the book “Albinism – just a gene!”, the origin of albinism and how it develops are vividly described and, in the course of it, how inheritance works is explained. Genetics determines our appearance. But as human beings, we learn from our actions. The book also talks about working together, respecting each other, and being there for each other. Professor Rappold emphasizes the valuable support that self-help groups can give to affected people. As the patron of an umbrella organization comprising many hundreds of self-help groups, I can only confirm this. If we unite, we can make a big difference – and this is how this cross-border friendship project was born. On my travels through various African countries, I have met many amazing and committed people, who stand up for the rights and medical needs of their fellow human beings, including people with albinism and their families. The initiative described in this book is another building block to helping people with albinism.

I wish the initiative every success and very much hope that it will make an important contribution to educating and clarifying what albinism is and preventing crimes in the future.