SAIDA - The South African Inherited Disorders Association

Albinism has been defined as an inherited absence of pigment (hypomelanosis) that is limited to the eye (ocular albinism), or involves the eye and skin (oculocutaneous albinism) and in which nystagmus (fast, rhythmical movement of the eye), decreased visual acuity and photophobia (fear of light) are present.

Oculocutaneous albinism is more common than ocular albinism and is inherited as an autosomal recessive disorder. In addition to poor vision, people with oculocutaneous albinism have hypopigmented skin which sunburns very easily and is highly susceptible to skin cancer. Although young children with albinism may be slower to crawl and walk due to visual problems, it is important to remember that their intelligence is within the normal range.

In the South African black population, about 1 in 3900 people have oculocutaneous albinism while in the white population it is less common (1 in 15 000 people). There are about 10 000 affected individuals in South Africa.

There is still a certain amount of stigmatization of people with albinism in the community. Both public education about the condition and counselling for affected individuals and their families are required. A small parent support group in Johannesburg has been functioning under the auspices of SAIDA with more than 30 members all over the country. The objectives of this group are to educate the public about albinism, to provide support for affected families, and to support research into the condition. A second large group ( with more than 200 members) has also been established in Soweto.

The Albinism Society

Tony Ngwenya
P.O Box 9881
Johannesburg 2000
Tel (011) 838-6529