One concern is that health care systems appear to lack responsiveness to the needs of people with albinism in most of the countries surveyed, but there are notable exceptions. In terms of social status the survey reports that people with albinism frequently are disadvantaged, and several associated factors were noted by respondents.
However, also here the picture may be broader: across Africa there are numerous examples of people with albinism in high socioeconomic strata, as professionals, politicians, musicians etc. Some have used their public status to support action for people with albinism. In terms of our survey, there are several limitations.
The number of responding countries was small and due to the dissemination mechanism employed, we had little influence on the choice of actual respondents to the survey. Therefore, it is likely that not all respondents were fully aware of the scope and depth of problems facing the population of people with albinism in their country. Accordingly, we found varying degrees of detail and specificity in the responses.
The responses should be seen as anecdotal rather than based on scientific studies; in this pilot survey we did not ask for specific supporting scientific evidence. Nevertheless, the survey provided some valuable information and shed light on the gaps in knowledge. These can serve as a guide for more detailed assessments and programmes in the future.
A multidisciplinary approach is recommended for future research and intervention programmes [ 6 ]. Epidemiological research should include more representative and better defined populations. Medically, health care providers need to be educated about albinism and the special needs of this patient population. Socially, efforts need to be made to increase awareness on the different aspects of this disorder.
By informing the public about albinism, one can hope to gradually decrease the discrimination within the health care arena as well as in the society at large. Public health programmes need to take into account the various challenges facing people with albinism. Currently, there are some programmes in place to address the medical concerns of this population in certain parts of Africa.
For example, the Regional Dermatological Training Center RDTC in Moshi, Tanzania runs a mobile skin care clinic where a doctor and a nurse regularly visit villages to check the skin of people with albinism and provide education on protection from UV exposure [ 19 ]. Also, in South Africa, at a school for the visually impaired, there are covered walkways, trees in the courtyard and shutters on the windows in order to decrease the UV exposure [ 5 ].
However, further efforts in more African countries are required to adequately address health and social needs of people with albinism. Many of the following recommendations have been mentioned in previous publications [ 5 , 6 ]. Our suggestions for action include:. Integrate albinism awareness in the school curricula, especially to correct misconceptions about the etiology of albinism.
Educate counsellors in schools about albinism. Train health care providers at clinics and hospitals about albinism and the effects that UV exposure can have on this condition. Encourage community self-help support groups. Implement programmes to aid people with albinism in finding indoor occupations. Albinism, especially in Africa due to extreme sun exposure, is a condition that requires further attention than in the past.
Although prevalence data are scarce and further epidemiologic research is needed, the number of people living with albinism in Africa is likely to be as high as tens of thousands. Our findings underscore the need to better address the already known medical problems facing people with albinism, but also issues of social discrimination against this population.
Some progress has been made thus far in terms of medical and social care but we hope to further increase the awareness of albinism throughout African societies in the future. Public health action should focus on educational, medical and occupational settings. MR developed the project idea. EH and MR formulated the questionnaire. EH performed the literature review.
EH and HZ organized and analysed the survey, drafted and critically reviewed the paper. MR provided sections to introduction and discussion. All authors reviewed and agreed on the final version. The pilot survey was drafted in English, French and Portuguese and then distributed through the WHO Regional Offices in order to gather further insight into the problems facing people with albinism and any available epidemiological information throughout Africa.
Patricia M. Lund for help in the preparation of this manuscript. No further external funding was obtained. National Center for Biotechnology Information , U. BMC Public Health. Published online Aug Author information Article notes Copyright and License information Disclaimer. Corresponding author. Esther S Hong: ude. Received Mar 3; Accepted Aug This article has been cited by other articles in PMC.
Abstract Background Oculocutaneous albinism OCA is a genetically inherited autosomal recessive condition and OCA2, tyrosine-positive albinism, is the most prevalent type found throughout Africa. Methods Systematic electronic search of articles in PubMed concerning albinism in Africa. Results Epidemiologic data on albinism, such as prevalence, were available for South Africa, Zimbabwe, Tanzania and Nigeria. Conclusion The estimated prevalence of albinism suggests the existence of tens of thousands of people living with albinism in Africa.
Background Oculocutaneous albinism OCA encompasses a heterogeneous group of genetic conditions with an autosomal recessive inheritance. Methods Identification of publications We conducted a literature search using PubMed with no date or language limitations. WHO albinism information survey A pilot questionnaire was drafted to augment the limited results of the literature search on albinism.
Results Systematic literature review The search yielded a total of publications. Table 1 Estimated prevalence and number of people with albinism by country. Open in a separate window. They may also have problems with reduced depth perception and with tracking an object with their eyes. Albinism occurs globally, in all gender, racial and ethnic groups. Estimates of affected people as part of the general population vary from region to region.
The highest rate is in Sub-Saharan Africa with an estimated 1 in 5, people likely to be a person with albinism in Tanzania. Published On 25 Apr Al Jazeera answers some of your questions below. Moreover, there are superstitions in some parts of Africa that albino body parts bring power, wealth or sexual conquest, that having sex with a person with albinism cures HIV and AIDS.
Furthermore, some believe that albinism is contagious and can be spread through touching, that their mothers were impregnated by a white man, that people with albinism have a low IQ and that they are housed by the ghosts of the European colonists. There are very few health services in Africa focused on people with albinism, and many of those people cannot afford neither sunscreen nor protective clothing. Identified areas requiring both governmental and societal intervention include healthcare, advocacy and social awareness education, social inclusion, academic education, economic empowerment and socio-political protection from various forms of societal abuse and discrimination.
Following increased international inquiry at the end of the s, Tanzania began to utilize resources to cope with traffickers and protect people with albinism; in order to do so since hundreds of children were removed from their families, sometimes without any consultation or consent, and placed in shelters where they were isolated from society; according to activists who spoke to Human Rights Watch, orders from the government to protect people with albinism were enforced by district commissioners, who oversee security in their respective districts being also responsible for their safety.
The Tanzanian government also tackled impunity for ritual crimes, notably by investigating, arresting and prosecuting those who attack or sponsor attacks against people with albinism; in , it announced a ban on witchdoctors, leading to over suspects who were reportedly arrested by the authorities. In the European parliament EP stated a resolution on situation of people with albinism in Malawi and other African countries:.
Who we are Our team Blog Press and awards. Work and impact Sunscreen made in Africa Transparency. Donate now Become a member Become a volunteer Get your company involved. The response in many cases of the community of people with albinism has been to take refuge and protect themselves together, which inevitably leads to families being established between people with albinism Given that in Africa the majority of these people are of the same kind of albinism, then all their children will also present albinism, artificially increasing the proportion of people with albinism that should be in the population.
Most frequent types of albinism In Europe the most common type of albinism is OCA1 oculocutaneous albinism type 1 , caused by mutations in the TYR gene. We use our own and third-party cookies to improve our services and to personalise and analyse your browsing. You can accept our cookies by clicking the OK button, change the settings or obtain more information in our cookies policy. Close Privacy and Cookie Policy Overview We use our own and third-party cookies to improve the browsing experience and offer content and advertising of interest.
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