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Originating from the word “albus,” meaning white in Latin, albinism is a genetic disorder resulting in a decrease or absence of pigmentation in the hair, eyes, and skin.
The prevalence in regions of sub-Saharan Africa is estimated to be much greater than these figures; for example, it is estimated at about 1:4000 in Zimbabwe
Braun-Falco O, Plewig G, Wolff HH. Dermatologie und Venerologie. Germany: Ludwig Maximilian Universitat Munchen, Klinik fur Dermatologie und Venerologie der Medizinischen Universitat Lubeck; 2006.
Albinism most commonly arises from mutations in genes encoding for proteins involved in the synthesis or transport of melanin by melanocytes. As well as giving skin its color, melanin protects the skin from the deleterious effects of the sun’s ultraviolet radiation (UVR) and, although present, melanocytes in OCA are dysfunctional, predisposing individuals to cutaneous and ocular pathologic conditions. This is particularly problematic for albinos living in South Africa who suffer both emotionally and physically from dermatologic malignancies and, more recently, must cope with being hunted for their body parts as well. Thus, it is imperative to inform the medical community and the general national and international public about the tragedies faced by albinos to protect them from skin cancer and ritualistic murders by individuals seeking wealth through clandestine markets perpetuating witchcraft.
International Federation of Red Cross (IFRC) and Red Crescent Societies. Through albino eyes. The plight of albino people in Africa’s Great Lake’s region and a Red Cross response. Advocacy Report. 2009.
Throughout Africa, an indeterminate number of individuals with albinism, especially children, have been the victims of brutal attacks and murder in the name of witchcraft, superstition, and wealth (Box 1). Most recently, the atrocities committed against albinos has received widespread attention because of various crimes reported, such as infanticide, kidnapping, amputations, and decapitations, committed for purposes of supplying highly valued body parts used for amulets, which are then sold in underground witchcraft markets. For example, up to $75,000 may be offered for a set of arms, legs, ears, and genitals from an individual with albinism.
International Federation of Red Cross (IFRC) and Red Crescent Societies. Through albino eyes. The plight of albino people in Africa’s Great Lake’s region and a Red Cross response. Advocacy Report. 2009.
Common myths and misconceptions regarding albinism
Weaving albino hair into a net improves the chances of catching fish
Albino body parts worn as amulets bring good luck, fortune, and health
Albino body parts are a necessary ingredient for witchdoctor potions
Albinos have magical superpowers and can cure diseases
Intercourse with an albino lady will cure human immunodeficiency virus (HIV) infection
Spitting on an albino prevents the condition in one’s family
Mother of albino child was laughed at by an albino during pregnancy
Albinism is caused by a missing top layer of skin
Albinos and their mothers are possessed by evil spirits
The devil stole the original child and replaced it with an albino
Albinism is very contagious and spread through touching
Albinos are housed by ghosts of European colonists
Albinos have low brain capacity and cannot function at the same level as others
Mother of albino was impregnated by a white man
The main driving forces underlying these profiling crimes are ignorance, myth, and superstition, such as the belief that individuals with albinism possess superpowers or that their body parts bestow fortune and health.
Thus, the stigma and atrocities affecting the albino population may be attributed to lack of familiarity and education about albinism coupled with ignorance. Compared with albinos in developed countries, many albinos in sub-Saharan Africa suffer from a lack of access to health care and awareness within their communities of their condition. This may manifest itself in a higher and earlier incidence of skin cancer, mortality, and stigmatization.
Based primarily on its major pattern of autosomal recessive inheritance, the prevalence, morbidity, and mortality of albinism could be diminished with the education of school-aged children, particularly emphasizing the consequences of marrying relatives. Although many of the genetic causes and inheritance patterns of albinism have been established, many communities are uninformed and unaware of the implications of such consanguineous matrimonial arrangements.
For instance, some of the coastal communities in Tanzania “are matrilineal. Children of a maternal uncle belong to the clan of the wife of that uncle and therefore to a different clan from the children of his sisters and brothers. First cousins may therefore marry, enhancing the chances of albino offspring. Compounding this is the influence on coastal people of the Arab tradition of marrying among relatives, so that family property remains within the clan.”
These practices inevitably increase the incidence of albinism amongst children of related parents. Nevertheless, the traditional consanguineous marriage arrangements are not the only reason for the high prevalence of albinism in certain regions, as “communities may have fewer cases to show because many areas still practice infanticide. Traditional midwives may sometimes kill off albino children and the case is then presented as a stillbirth.”
Such evidence further highlights the prevalence of severe stigmas and misconceptions associated with albinism and the need for improved awareness.
Tanzanians as well as other sub-Saharan Africans believe in numerous myths and superstitions regarding the etiology of albinism, unaware of its genetic cause, and further contributing to its high incidence. For example, Lund surveyed 138 schoolchildren (average age 14.4 years old) with albinism in Zimbabwe about the cause of OCA, and found that 70 (50.7%) had no knowledge of why they lacked skin coloration and were different from their classmates, 15 (10.9%) favored a biologic reason, 19 (13.8%) believed God was responsible, and 13 (9.4%) stated other incorrect causes, such as witchery, punishment for a family member mocking an albino and “top layer of skin missing.”
Other misconceptions regarding the cause of albinism include the belief that the mother was impregnated by a white man or that the devil replaced the African child with an albino.
demonstrated that although 59 participants with OCA had an albino relative, only 13 believed that the condition was inherited. In some regions, the misconceptions about the cause of albinism might extend into the health care field to include physicians and nurses, who may be under the impression that albinism is contagious and therefore might avoid physical and social contact with those affected.
In addition to the distinct physical features of albinism, the social structure and superstitious belief system provides the grounds for further prejudice and social rejection. In Zimbabwe, albinos are called “sope,” which suggests that they are inhabited by evil spirits; in Tanzania, they are also ridiculed and called “nguruwe,” which means pig; “zeru,” which means ghost; or “mzungu,” which means white person.
Beginning in childhood, their marked and dissimilar exterior appearance compared with “normally pigmented family members and the rest of the black community, results in problems of acceptance and social integration for those affected.”
reported that albino students in a school in Zimbabwe were not only called names and ridiculed, but were also beaten and avoided by peers who would not eat or play with them. Some participants in this study reported that they were mocked and avoided by family members, who would not share food or clothes with their albino relatives. Many albino children were not allowed to visit their parents’ workplaces and were sometimes placed in the sun to become accustomed to UVR.
International Federation of Red Cross (IFRC) and Red Crescent Societies. Through albino eyes. The plight of albino people in Africa’s Great Lake’s region and a Red Cross response. Advocacy Report. 2009.
Thus, it is not surprising, that one 15-year-old albino confessed, “I cannot see the blackboard clearly. I cannot work in the open doing manual work. I don’t like walking long distances to interschool sports. I am always being humiliated by others calling me names.”
The superstitions surrounding albinism may also place mothers of albinos in a vulnerable position, subject to stigmatization and harassment, and resulting in severe psychosocial distress.
As the general medical term implies, OCA also affects the eyes; some studies have indicated that up to 100% of albinos have some form of visual impairment.
Ocular disorders associated with OCA include hypopigmentation of the iris and retina, hypoplastic fovea, hyperopia, strabismus, photophobia, loss of stereoscopic perception, and nystagmus.
Such visual handicaps hinder some of the major components of learning, such as reading and seeing the blackboard. These obstacles place albino students at a disadvantage, as many cannot afford ophthalmic care or appropriate visual aids. Visual impairments, poverty, lack of access to health care, and that lack of educational provisions inevitably result in poor educational outcomes and continued frustration. Consequently, this fosters a cycle that prevents albinos from succeeding and condemns them to manual outdoor labor, such as that in sisal plantations, further increasing the risk for skin damage.
Because of a lack of melanin, which serves as the skin’s own sunscreen against UVR, albinos are predisposed to various types of solar skin damage, such as actinic cheilitis, actinic keratoses, and various skin cancers.
The likelihood of damage increases in tropical climate regions, as the amount of clothing worn is typically minimal while the daily exposure to UVR is maximal. Studies have shown that the risk for dermatologic malignancy in sun-exposed areas (such as the face, ears, neck, and shoulders) is enhanced in individuals with OCA, who may present with solar keratoses as early as 8 years of age.
A study amongst individuals with OCA in Tanzania revealed that 100% exhibited skin damage by the first year of life and advanced symptomatic cancers were observed in 50% of those between 20 and 30 years of age, with 1 case of skin cancer in a 9-year-old child.
In a Nigerian study, no albinos older than 20 years of age were free of subclinical malignant skin damage and in the 1980s, less than 10% of albinos living around Dar es Salaam survived beyond 30 years of age. Within Tanzania, less than 2% of albino children were expected to reach 40 years of age.
International Federation of Red Cross (IFRC) and Red Crescent Societies. Through albino eyes. The plight of albino people in Africa’s Great Lake’s region and a Red Cross response. Advocacy Report. 2009.
A more recent study conducted in northern Tanzania reported that although albinos previously died between 20 and 30 years of age, today they live considerably longer because of preventive sun protection.
Nevertheless, in regions afflicted by poverty, sunscreens are unaffordable and only available to a limited portion of the population; thus, strategies should focus on sun avoidance and other means of protection early in childhood.
During the 1980s in Dar es Salaam, individuals suffering from albinism had about 4 years between the presentation of irreversible skin pathology and metastatic disease, mainly caused by squamous cell carcinoma (SCC) in the head and neck region.
Lack of access to medical care or neglect might be one of the reasons why skin cancer has a deadlier course in the albino population near the Equator than in other developed countries.
Mortality from SCC is low amongst fair-skinned individuals in developed, equatorial nations with high levels of UVR, but amongst albinos in Nigeria and Tanzania, it is very high.
The low life expectancy in the albino population is clearly multifactorial. Those suffering from albinism are often unable to succeed in school. One study reported that only 12 of 350 adults with OCA worked indoors, suggesting that outdoor occupations are contributing to the lower life expectancy for albinos.
As previously mentioned, albinos are often discriminated against and the system in place does not have the educational provisions to address their poor eyesight and allow them to succeed and compete with the nonalbino population. For example, in his editorial article, “White skin, black souls”, Kuster
indicates that in Malawi, “it is a common belief that albinos have low brain capacity and are unable to function at the same level as ‘normal people’.” Kuster
further notes than an educated albino woman never held a job in Zimbabwe because “employers always said, more or less, during the interview that an albino secretary would hurt the company’s reputation” because of the fear that albinism is contagious.
The first step in assisting individuals with albinism in sub-Saharan Africa would be to educate the population as a whole about the cause of albinism and decrease prevalence by increasing awareness of the implications of consanguineous relationships (Box 2). Poverty and illiteracy in some parts of Africa may result in a lack of understanding among individuals that marriage between cousins can increase the chances of acquiring certain genetic disorders.
Raising awareness through radio broadcasts and schools’ curricula might be helpful in promoting integration, albeit challenging, given that albinism is steeped in superstition and misconceptions that lead to fear and misunderstanding.
Albinos and parents of albino children must understand the causes of albinism, its many medical and psychosocial implications, and how to appropriately protect themselves from UVR. In particular, the benefits of sun protection and the consequences of solar injury should be stressed, as studies have shown that many albinos are not familiar with this information. For example, in a study by McBride and Leppard,
10% of albinos surveyed stated that they only applied sunscreen at night and some did not wear sun-protective clothing, such as wide-brimmed hats, because of fashion and cultural concerns. It is also imperative that mothers of newborns with albinism fully understand the cause before returning home from the hospital, as members of the family and community may assume that the infant is of uncertain ancestry, resulting in condemnation of the mother and rejection of the child.
Teachers must be informed that children with albinism are as capable as other students, but have difficulties with vision and reading, thus requiring enlarged text textbooks and seating closer to the blackboard.
In the clinical setting, individuals with albinism should be provided with dermatologic examinations, guidelines on how to shield themselves from the sun, and sun protection products such as sunscreen, sunglasses, opaque clothing that covers most of the skin, scarves, high socks, and wide-brimmed hats. Given that most albinos are unemployed, they cannot afford sun-protective gear, which is expensive in Africa, thus it should be encouraged that society establish measures to support albinos and their families. Governmental endeavors may include assistance with indoor job placement, supplying adequate amounts of sun-protective products and funding for organizations involved in albinism awareness and support. Most of the educational provisions necessary for students with albinism are not being met, and in Tanzania, unlike Zimbabwe,
In the current circumstances, little can be accomplished without the government’s support and international assistance. An unsupportive social environment hinders the progress of individuals with albinism, stagnating their intellectual and physical potential, despite their desire to progress.
Recently, various organizations dedicated to increasing albinism awareness and assisting albinos in attaining proper medical care and appropriate sun protection have been established throughout the world (Table 1). For example, the Regional Dermatologic Training Center (RDTC) at the Kilimanjaro Christian Medical Center (KCMC) in Moshi, Tanzania, has created an albino assistance program and mobile skin care clinic.
The primary mission of the RDTC has been to significantly improve the living conditions of albinos living in Tanzania. A physician and nurse in a 4-wheel drive vehicle regularly visit 10 villages within a100-km2 area in Arusha and Kilimanjaro. During these visits, skin checks are performed and sun protection information and supplies are provided.
Dr Aisha Sethi, an assistant professor of dermatology in the Pritzker School of Medicine, has dedicated her time to educating Malawians about albinism; she is specifically interested in eliminating the various superstitions surrounding OCA (Fig. 1).
In 2007, Sethi established the first albinism clinic in Malawi’s capital, Lilongwe, and for the past 3 years has organized an annual Albino Awareness Day in Malawi, aimed at skin cancer screening, public education, and denouncing stigmas (Fig. 2). Dorothy Shope, an education coordinator in the University of Chicago Medical Center’s dermatology section, recently recommended that the team provide albinos with magnifying glasses, a simple and inexpensive solution for children without access to eye care or corrective lenses.
Established in 2003, the Tanzania Albino Center (TAC) is an organization in Arusha, Tanzania; its aim is to improve the lives of albinos with educational and medical assistance so that they may live safe, accepted, and prosperous lives in the society of their choice.
In partnership with the Hands of Africa Foundation and the Dutch organization, Stichting Afrikaanse Albinos (SAA), TAC’s major goal is to build a sunscreen development factory in Arusha, in order to provide adequate supplies of sunscreen to the tens of thousands of albinos living in Africa. TAC has also partnered with Assisting Children in Need (ACN), which will help the organization expand its dormitory to house more than 80 albino children, and another Dutch group, Cordaid, which provides educational funding for 38 albino children in Moshi and Kilimanjaro. In addition, TAC will soon establish a mobile health care clinic to serve the more than 800 albinos living in Arusha.
The International Federation of Red Cross (IFRC) and Red Crescent Societies has collected food, clothes, cash, mattresses, and beds in Burundi in an attempt to reintegrate displaced albinos back into mainstream society, while simultaneously striving to minimize their vulnerability to hunters, skin cancer, and educational and social marginalization.
International Federation of Red Cross (IFRC) and Red Crescent Societies. Through albino eyes. The plight of albino people in Africa’s Great Lake’s region and a Red Cross response. Advocacy Report. 2009.
The IFRC has also established several institutions for displaced albinos, such as the Kabanga School for the Disabled in Kasulu, Tanzania, which offers shelter and protection for more than 50 albino children and their mothers who fled their homes in fear of persecution. However, the school is in dire need of support and improvement as it lacks a proper kitchen, dining hall, and beds to accommodate the increasing number of albinos who are attracted to the school as a safe haven from harassment. Bartha Ismaeli, a 15-year-old with albinism and her 3 albino siblings recently relocated to the school after hearing about albino killings on the radio, stating, “We were frightened that attackers might come for us.
When we are here, we feel much safer. There is a day guard who watches us and, at night, two armed policemen come and count us before we enter the dorms. They then patrol the compound at night and that is how we know we are safe.”
Asante Mariamu, an organization named after Mariamu Staford, a Tanzanian woman with albinism who survived an attack by albino hunters, coupled with the word “asante,” which means thank you in Swahili,
is determined to help stop the slaughter of albinos in East Africa, ensure swift prosecution and conviction of their killers, and provide life-saving education and supplies for skin cancer prevention. Positive Exposure, a project initiated by photographers Rick Guidotti and Diane McLean in 1997, portrays individuals with albinism in a positive light via photography and video clips. Positive Exposure also hosts self-esteem and self-advocacy workshops for albinos.
which provides information about the adverse effects of UVR, stressing that overexposure can injure the skin, eyes, and immune system. Other albinism awareness groups in Africa and around the world that deserve recognition include the Albino Association of Malawi (TAAW), Tanzania Vision Support, and the National Organization for Albinism and Hypopigmentation (NOAH),
and British Broadcasting Corporation (BBC), highlighting tragic stories such as that of a man who was caught attempting to sell his albino wife for about $3000
Furthermore, since 2007, there have been more than 60 albino murders in Tanzania and Burundi, although conviction rates have been low. In 2009, 3 men were sentenced to hanging for the murder of an albino boy, a landmark case that represented the first ever conviction for albino murder.
In early 2010, US Congressman Gerald Connelly, a democrat from Virginia, issued a statement urging President Barack Obama’s participation in the fight against unwarranted albino killings in Africa.
Connolly was inspired to propose the legislation following his meeting with Mariamu Staford a young albino woman from rural Tanzania who had both of her arms hacked off by fellow villagers, and whose story also inspired the formation of the Asante Mariamu organization by Susan and Doug DuBois. Connolly was further alarmed to learn that although Staford was able to identify the attackers, they had not been charged or arrested. During his proposal, Connolly stated that he “… applauded the dedicated group of local residents who brought Mariamu’s story and the stories of other atrocities against people with albinism in East Africa to my attention. With their help and the passage of this resolution today, maybe we can bring an end to these horrific and heinous crimes,”
adding, “Tanzanian Prime Minister Mizengo Pinda has condemned the violent crimes against people with albinism, but judicial and enforcement barriers remain.”
The law, which urges local African governments to take immediate action to condemn the violence against albinos and persecute perpetrators, was passed by the House of Representatives on March 9, 2010, with an almost unanimous vote of 418 to 1.
The members of the European Union have also recently adopted a special resolution condemning the albino murders in Tanzania and Burundi and supporting justice for the victims and criminals.
In July 2010, the fourth National Conference on Albinism was held in Sokoto, Nigeria, to establish an international intervention for albinos living in Africa, with a central theme emphasizing that albinos may live free of skin cancer and persecution.
initiated a clinical genetic outreach program in northern South Africa in which a network of genetic nurses was established to identify albino babies and offer immediate counseling and support. Lund
demonstrated that genetic care programs used in Northern Africa facilitated low-cost care, improved self-esteem, and increased community awareness. Today, in northern South Africa, pamphlets on albinism are available in various languages and genetic nurses often speak on the radio to raise awareness.
However, the usefulness of these pamphlets has been questioned, as albinos attending an outreach clinic in Tanzania did not have a better understanding of sun avoidance after reading the booklets.
recently demonstrated at a special school for visually impaired children in South Africa. Although most children possessed hats, the brim widths were found to be insufficient in terms of face and neck protection, resulting in visible sun damage. The average brim width was 5.4 cm, far narrower than the minimum of 7.5 cm suggested by Diffey and Cheeseman
after their studies with model head forms and ultraviolet-sensitive film badges. Although the students understood the need to use sunscreen, they did not understand the term SPF (sun protection factor) and only applied the lotion sporadically; one-third were not wearing it at the time of interview.
Thus, even at a private boarding school for children with visual impairments, where more education on albinism and sun protection strategies was provided, albinism understanding was not universal, prompting the need for improved teaching techniques.
have also suggested using individuals with albinism to deliver information about sun protection and initiate support groups to provide firsthand knowledge about their experiences to individuals with a similar condition. The public must be informed that apart from a genetically induced lack of pigment, albinos are normal human beings. In particular, public school teachers should be aware of their eye problems and make proper provisions in the classroom, such as permitting them to sit close to the blackboard. Albinism is not associated with abnormal intelligence, but this is a common belief among educators, likely because of poor vision and the resultant setbacks at school. Other suggestions include enlarged textbooks and provision of magnifying lenses.
Albinos must be educated about the cause of their condition and the implications of marrying a relative with regular pigmentation. Although most albinos have albino relatives, most of them are not aware that their condition is inherited. And perhaps most importantly, the IFRC suggests that, “the first step in the response to the aftermath of the killings, as with any humanitarian intervention, is to register the beneficiaries. But in this ‘silent emergency’ they must first be found. In the current atmosphere of mortal danger, albinos in remote rural areas (still the vast majority) are only likely to reveal themselves to community-based Red Cross volunteers.”
International Federation of Red Cross (IFRC) and Red Crescent Societies. Through albino eyes. The plight of albino people in Africa’s Great Lake’s region and a Red Cross response. Advocacy Report. 2009.
Although there is currently no cure for albinism, many of the associated morbidities can be prevented with improved security, proper sun protection, and eye care. In Africa, sunscreen is costly and difficult to attain, and many believe that the solution is UVR avoidance and protective outerwear, which can be achieved with community-wide education and distribution of sun-shielding garments.
To better meet the many medical and psychosocial needs of individuals with albinism in Africa, awareness groups and public health interventions must continue to gain support. Society as a whole must become aware that stigmas and negative attitudes have a significant effect on the social, emotional, and psychological aspect of an albino’s quality of life.
Acknowledgments
The authors kindly acknowledge Dorothy Shope for the contribution of photographs and Mariya Mazuryan JD for her editorial efforts.
Braun-Falco O, Plewig G, Wolff HH. Dermatologie und Venerologie. Germany: Ludwig Maximilian Universitat Munchen, Klinik fur Dermatologie und Venerologie der Medizinischen Universitat Lubeck; 2006.
International Federation of Red Cross (IFRC) and Red Crescent Societies. Through albino eyes. The plight of albino people in Africa’s Great Lake’s region and a Red Cross response. Advocacy Report. 2009.
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