On the islands off Panama’s Caribbean coast, children who have albinism are considered blessed and informally dubbed “grandchildren of the sun” and “children of the moon”, who could ward off mythical winged creatures under a lunar eclipse.
In Africa, however, many albinos live a much harsher existence. They are often ostracised and face a barrage of social stigma and discrimination. They are also considered bad luck and either killed at birth or hunted down for their body parts to be used in witchcraft.
This week, the Tanzanian High Court handed down the death sentence to four people who abducted, killed and dismembered a 17-year-old albino boy in 2008 to use his organs for witchcraft. The United Nations have tallied more than 75 albinos killed in Tanzania since 2000.
Although albinism occurs around the world, it is more common in sub-Saharan Africa. While the worldwide prevalence is about one in 17 000 people, in parts of sub-Saharan Africa the ratio is one in 1000. The heavy caseload in Africa is simply due to a high number of people carrying the albinism genes.
Albinism is a genetically inherited condition that develops when both parents have copies of an abnormal gene. The results is that from birth the body does not generate melanin to darken the skin. The lack of this pigment results in the person having very pale skin, white or sand-coloured hair, and light brown or blue eyes.
People with albinism may also have impaired vision, be sensitive to bright light, squint, nearsighted and sometimes involuntarily roll their eyeballs from side to side.
For albinos, discrimination is not their only concern. Albinism remains a grave public health issue and the World Health Organisation has recognised it as a significant health problem in sub-Saharan Africa that requires lifelong management.
The risk, for example, of people with albinism in Africa developing skin cancer is 1000 times higher compared with the general population. The natural sun protection factor (SPF) of someone with dark skin is 13. For those with fair skin, their natural protection factor is only three. Chronic sun exposure is therefore particularly detrimental – a difficult challenge given that daily temperatures in Africa exceed 35°C in summer.
Research in Nigeria has shown children suffering from albinism can get blisters on their skin from sun exposure. In Dar-es-Salaam in Tanzania, sun exposure results in shiny, leathery and inflamed skin.
Challenges in treatment
Research shows there are several challenges in screening and treating people with albinism for cancer. These include doing tests at a stage that is too late as well as financial constraints which lead to patients failing to complete treatment programmes.
The use of different types of sun protection by people with albinism in sub-Saharan Africa is also inconsistent. One study in Tanzania showed that many albinos did not wear hats and most wore short-sleeve shirts.
In another Tanzania-based study, the majority of albinos interviewed believed skin cancer was preventable. Most understood sunscreen provided sun protection but at least 10% applied sunscreen at night. There were also concerns about fashion, culture and heat that stopped people from wearing sun-protective clothing.
A lack of knowledge about sun protection options was also a factor. Children at a school in the north of South Africa did not know what “SPF” meant, and many applied aqueous cream instead of sunscreen for skin protection.
No health policies
There is no treatment or cure for albinism yet no country in the world has developed a health care policy to assist albinos.
Although the Nigerian government has developed a draft national policy on albinism, it is not clear whether this policy has been passed.
Such policies may, however, be an important national step towards providing the support and care needed by people with albinism in countries around the world.
Although there is no policy in South Africa, sunscreen is provided free of charge by the government’s health care facilities. But the creams are often not used and it is costly for patients to get to clinics in remote areas.
Considering the challenges around albinism, there should be a health care policy for it. Despite relatively low total numbers, a policy is warranted for this particular vulnerable, at-risk group given the high incidence rates of albinism on the continent.
Policy-supported efforts should include health care support for eye and skin care. It should also stress the importance of protection from the sun with clothing, hats, sunglasses, shade and sunscreen. And information as well as educational material needs to reach people who suffer from albinism and their families, health care providers and educators.