In Conversation with Two of South Africa’s Leaders on Albinism: Nomasonto Mazibuko & Dr. Jennifer Kromberg

Nomosonto Mazibuko, a teacher, and Jennifer Kromberg, an academic, in conversation about their relationship while working in the Albinism field in South Africa. Both are collaborators on the Mothering and Albinism project.

A long time ago, in about 1972, in Johannesburg, South Africa, Nomosonto (NM) and Jennifer (JK) met. NM was initially a teacher with albinism working in the community and Jennifer worked, initially, as a medical social worker and an academic researcher. NM came from a large Zulu family, with 10 children, 5 of whom had albinism. JK came from good Irish stock and was researching albinism (in Soweto, with its population of 803,000) at the time. They built up a close relationship and snippets of their many conversations went something like this:

JK: What was it like growing up with albinism?

NM: I was the ninth child and the fourth one with albinism. My mother used to pair us children up, so I always had a protector and grew up feeling secure. We were a well-known family in Soweto. I remember meeting you when you came to visit my mother to discuss albinism. We were one of the first families you found.

You explained the genetics and inheritance of albinism to me, which changed my life. Before we met you, we believed the traditional myths about causes and that they were the reason we were born white to black parents. I was so relieved to learn that it was genetic and not caused by witchcraft or old wives’ tales.

That was almost 50 years ago now. How did you experience that interaction?

JK: Your mother was a wonderful woman. She managed her large family very well and was a strong believer in education. She made sure both her children with albinism and those without were confident people, had everything they needed and took advantage of every opportunity. I learnt a lot about albinism from her. You were young then; I did not really get to know you till later. Did you study, marry and have children? 

NM: Yes, I married a man, who was at school with me, and we had 4 children, none of whom had albinism. As you later explained, all of them were carriers of one gene for albinism, which they had inherited from me, but they had also inherited a gene for normal pigment from their father. I qualified as a teacher and taught for many years. In 1993 I did a Project Management course at the University and received a funding grant with which I set up the first Albinism Society. Together with my younger brother Tony, we built up the organization, ran an office and support groups in Johannesburg, and attended occasional congresses on albinism  (at the first one in USA I realized albinism was not only an African condition but a worldwide one). I was also invited to visit and consult in other countries. At the same time, I continued to participate in the local research projects, mostly run by you, and learnt a lot from our interactions.  What were some of the key issues you were researching during that time?

JK: I started by investigating the prevalence of albinism, and then, together with my long-term research assistant, Esther Zwane, went on to study the psychosocial and cultural, medical and management issues surrounding the condition. Also, in our laboratory the scientists worked on identifying the gene mutations responsible for the albinism in southern Africa. You participated in and helped us on many of these projects.

You and I were both involved internationally, with networking, speaking about our work and spreading awareness about albinism. Tell me a bit about your travels.

NM:  While you spoke at congresses in Cameroon and elsewhere, I was busy consulting with Directors of Albinism Societies in various African countries and initiating a Pan African society. More recently, we both attended the Round Table on Albinism held in Geneva, organized by the team from the Nursing Faculty at the Trinity Western University in Canada. They discussed their large project on Albinism, Mothering and Human Rights, plans to do fieldwork in South Africa, and our collaboration. I enjoyed that experience, especially the networking with researchers from all over Africa.

JK. Yes, I thought it was a most stimulating meeting, I met so many interesting people and made new contacts. We also had a chance to have dinner together in Geneva, where we could catch up and talk about our local situation, the directions our work was taking, ideas for possible new projects and what else we could do in our retirement!

NM. You had recently written a book on Albinism in Africa, in your retirement. Tell me about that project.

JK. Yes, it took me (together with my co-editor Prashiela Manga) 3 years, but eventually it was published in 2018 in the USA. We got experts to write chapters on Dermatology, Ophthalmology, Low Vision Rehabilitation, Genetics, and Epidemiology, but most of the chapters I wrote myself (on the historical background, psychosocial, genetic counselling, medical care and other issues, including projects we had worked on together). Also, after several discussions with you and your second daughter, we wrote a chapter together on your personal perspective of living with albinism. The University set up a successful book launch, where the book was reviewed very positively, many copies were sold, and you and I together with our two daughters, proudly observed the proceedings!

Our relationship has been a warm, positive, mutually respectful, and long-lasting one and an example of how an academic can work productively with a member of the community.

We are continuing to communicate in our old age, to discuss issues associated with albinism and what we could be doing to improve the current situation, and to promote the Albinism Society theme, in which we both believe: “That albinism is a manageable condition”.        

Blog written by Dr. Jennifer Kromberg (Professor Emeritus University of Witwatersrand, Department of Human Genetics) & Nomasonto Mazibuko (National Director Albinism Society of South Africa & Gender Commissioner, Government of South Africa)

Kromberg, J. and Manga, P. (Eds.) (2018). Albinism in Africa: Historical, geographic, medical, genetic, and psychosocial aspects. Cambridge, MA: Academic Press.