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Estimated prevalence and number of people with albinism by country
Source publication
Oculocutaneous albinism (OCA) is a genetically inherited autosomal recessive condition and OCA2, tyrosine-positive albinism, is the most prevalent type found throughout Africa. Due to the lack of melanin, people with albinism are more susceptible to the harmful effects of ultraviolet radiation exposure. This population must deal with issues such as...
Context in source publication
Context 1
... publications (6 cross-sectional, 1 follow-up study) contained epidemiological data on prevalence for South Africa, Zimbabwe, Tanzania and Nigeria, as shown in Table 1. The prevalence of albinism from these studies ranged from as low as 1 in 15,000 in the East Central state of Nigeria [8] to as high as 1 in 1,000 in the Tonga tribe of Zimbabwe [9]. ...
Citations
... Males constituted a slightly higher proportion of the sample (61.5%), which is consistent with global trends observed in the prevalence of specific VIs. 8 This disparity might be partially explained by limited or unequal access to healthcare services, as men are often prioritised or more likely to seek medical attention conditions, potentially leading to their higher representation in the study. 9 In addition, cultural and societal factors may influence the likelihood of men and women seeking diagnosis and treatment for VIs. ...
Background: Understanding the characteristics of oculocutaneous albinism (OCA) in African populations is crucial for developing appropriate support strategies.Aim: This study aims to comprehensively analyse the demographic and visual characteristics of individuals with OCA in Botswana, Africa.Setting: This retrospective study was conducted at a private eye clinic in Botswana, Africa.Methods: A retrospective data collection approach was employed to gather information from African patients diagnosed with OCA. Information on demographics, socio-economic status, education, occupation, medical history, category of visual impairment, visual characteristics such as contrast and glare sensitivity and central visual field integrity and low vision services received was extracted from medical records and analysed.Results: The study involved 65 participants, primarily males (40, 61.5%), with a mean (s.d.) age of 29.2 (15.4) years. Most participants belonged to low (35, 53.8%) to middle-income (23, 35.4%) socio-economic groups. African-Tswana ethnicity was the most common among the participants (31, 47.7%). Nearly 80% had a best-corrected visual acuity (in better eye) worse than 6/12. Most participants had poor contrast sensitivity (47, 72.3%) and no defects in the central visual field (63, 96.9%). All participants experienced glare sensitivity (65, 100%).Conclusion: The findings highlight the critical need for targeted interventions to address the prevalent visual impairments among individuals with OCA in Botswana, aiming to enhance their quality of life and socio-economic integration.Contribution: These findings can inform interventions for OCA in Botswana, such as vision rehabilitation programmes, social support initiatives, and genetic counselling services.
... In most regions of the world, the prevalence of albinism is approximately 1 in every 20000 people; nevertheless, in some areas, such as East African countries, this number is 1 in every 1000. This trend is also increasing [6]. These people are exposed to many challenges, discrimination, and abuses since childhood. ...
... (5) Was the data collected in a way that addressed the research issue? (6) Has the relationship between the researcher and participants been adequately considered? (7) Have ethical issues been taken into consideration? ...
... (4) Was the recruitment strategy appropriate to the aims of the research?(5) Was the data collected in a way that addressed the research issue?(6) Has the relationship between the researcher and participants been adequately considered?(7) Have ethical issues been taken into consideration?(8) ...
... As a result of lack of the photoprotective melanin, albinos experience the damaging effects of ultraviolet radiation with a variety of manifestations − sunburn, elastosis, lentigines, actinic keratosis, and cutaneous cancers [3,4]. Furthermore, persons with albinism in Africa often face discrimination, marginalization, and lack of resources for effective photoprotection and basic health care [1,[5][6][7]. Photo-related morbidity and mortality in albinos are quite significant as reported in studies mainly from southern Nigeria [8,9]. ...
Introduction
As a result of genetically being deficient of melanin, albinos are particularly susceptible to skin damage from ultraviolet rays leading to photodermatoses such as sunburns, dermatoheliosis, and cutaneous cancers. These negatively affects quality of life and cause premature death. Little is known of the photoprotective measures available to and dermatological profile of persons with albinism in Plateau state, North Central Nigeria.
Objective
To describe the dermatological profile of albinos in Plateau state, Nigeria, photo exposure levels, photoprotection strategies, and factors associated with presence of photodermatoses.
Patients and methods
Consenting individuals with albinism attending the sensitization event hosted by the Centre for Albinism Right and Empowerment Network were recruited. Demographic information, occupational history, solar exposure, photoprotective practices, and perceived sun exposure were all documented using semistructured questionnaires. Physical and dermatological examination, dermoscopy, and laboratory investigations were used to make diagnosis. Statistical package for social sciences, version 26, was used to carry out univariate and bivariate analysis.
Results
While a wide spectrum of skin diseases was observed among the 59 albinos that participated. Photodermatoses were three times more than nonphotodermatoses. The commonest photodermatoses were solar elastosis (55.9%), solar lentigines (44.1%), actinic keratosis (27.1%), and sunburn (25.4%). Skin cancers affected 10.2% of all patients and 16.6% of persons more than or equal to 20 years. Generally, the presence of photodermatoses was associated with age and occupation while actinic keratotic changes specifically was associated with living in rural areas ( P =0.035). Despite this, only seven (11.9%) owned sunscreen at the time of study with more than a third (35.2%) being ignorant of existence of sunscreen lotions.
Conclusion
Continuous multifaceted programs that involve tracking, education, prevention, early detection, and treatment of photodermatoses will be planned to be targeted towards persons with albinism living in Plateau state.
... Although found in all population groups (Okulicz et al., 2003;Sajid et al., 2021), it has a relatively high frequency in sub-Saharan Africa. Research indicates that oculocutaneous albinism (OCA) is the most common type of albinism found in Africa (Baker et al., 2010;Hong et al., 2006). The physical appearance of PWA makes them stand out within the general African population. ...
... This finding corroborated the study conducted by the Ghana Association of Persons with Albinism (GAPA) in three communities, namely Abease, Bukuruwa, and Akwamufie, which revealed that PLWA is not permitted to reside in each of these communities due to customary practices linked to the existence of gods and river goddesses (ENA, 2020;GAPA, 2019). In an interview with traditional leaders of Akwamufie and Bukuruwa the researcher revealed that in the past, PLWA had been sacrificed to the gods to cleanse the community as corroborated by Hong et al. (2006). Subsequently, PLWA were barred from residing or staying overnight in these communities or going close to the Chief's palace, where the shrines of the gods are located (GAPA, 2019). ...
Albinism is typically misunderstood, resulting in myths and misconceptions about the condition in different parts of the world. This study explores the misconceptions about albinism in Ghana through the lens of lived experiences of persons living with albinism (PLWA) and other relevant stakeholders to ascertain the level of socio-cultural exclusion. This study used qualitative methods and a purposeful non-probability sampling strategy was employed to gather diverse perspectives of information from participants in this study. The participants with albinism, their families, and experts were interviewed in semi-structured street interviews about their lives and the impacts of albinism on their human rights. The results revealed the extent of the suffering and denials experienced by persons living with albinism in different communities in Ghana. It reveals that due to certain misconceptions many PLWA were denied access to education, brutalised, killed, some lost their source of livelihood, and dehumanised. The study recommends that the government should organise intensive public education and health awareness in collaboration with civil society organisations to demystify albinism and promote the human rights of PLWA in Africa and Ghana in particular.
... The chapter endeavours to uncover the multi-faceted influence of some aspects of ATR on the albinism discourse in Malawi by addressing the issues in the following four sections: (1) general discussion of albinism in sub-Saharan Africa; (2) the socio-cultural context of albinism in sub-Saharan Africa; (3) the nexus between African Traditional Religion (ATR) and albinism; (4) the retrieval of positive ATR beliefs and practices such as the African spirituality and ethics of Ubuntu/Umunthu to enhance the quality of lives of PWAs in Malawi. Hong et al. (2006) remark that the word "albinism" etymologically comes from the Latin word "albus" meaning white. Oetting et al. (1996) say that albinism refers to a group of inherited genetic disorders in which a person has partial or complete loss of pigmentation (melanin), which is responsible for the colouring of the skin, eyes, and hair. ...
... Baker et al. (2010) convey that if both parents have albinism or bear the gene, their children are more likely to be born with it. Tambala-Kaliati (2021) extrapolates that health issues associated with albinism in sub-Saharan Africa are aggravated by poverty, lack of sunscreen lotions, lack of hats with large brims, lack of clothing which covers almost the entire body, lack of sunglasses, and lack of access to adequate health care (Hong et al., 2006). Mártinez-García et al. (2013) explain that there are several types of albinism characterised by different gene defects. ...
This volume shares in the increasing recognition of the intricate relationship between religious practices and other social phenomena. Therefore, the authors undertake the study of ATRs within the context of other societal factors. BiAS 43/ ERA 16 reflects on the dynamics of the study of ATRs, the possible methodologies that can be employed for an analysis, and how the motif of continuity and change is captured in different contexts. The chapters cover ATR’s dynamic history up to now, changes in its relationship with Christianity, ATR’s social transformations, ATR and ethics, and ATR and health issues. The book is dedicated to the memory of the great Malawian scholar Joseph Chaphadzika Chakanza (1943-2019). The editors and authors: Louis NDEKHA (ed.) (Malawi) | Rhodian MUNYENYEMBE (ed.) (Malawi) | Judith BACHMANN (ed.) (Germany) | Joseph CHAKANZA (†) (Malawi) | Obafemi JEGEDE (Nigeria) | Jones MAWERENGA (Malawi) | Mastone Lenias Kachikwerete MBEWE (Malawi) | Joyce MLENGA (Malawi) | Edwin PHIRI (Malawi) | Thokozani Jackson SOLOMON (Malawi) | Sangwani TEMBO (Malawi) | Joachim KÜGLER (ed. coop.) (Germany)
... High prevalence rates of albinism have been reported in populations with African ancestry, with prevalence ranging from 1/5,000 to 1/15,000 in sub-Saharan Africa, including many reports about isolated, rural communities in some countries (Hong et al., 2006;Marçon et al., 2020). Lund et al. (2007) reported a high incidence of albino people in native communities in South Africa, which is considered a relatively common hereditary condition (Lund et al., 2007;Marçon et al., 2020). ...
Oculocutaneous albinism (OCA) is a heterogeneous group of genetic disorders involving deficiencies in melanin biosynthesis, with consequent skin, hair, and eye hypopigmentation. The world prevalence is estimated at 1/17,000, but there is high variability among populations. The affected individuals, besides clinical complications, can suffer from discrimination. The Brazilian population is highly admixed, with isolated and inbred communities. Previous reports indicated the presence of diverse isolated communities with a high prevalence of OCA in Brazil. The present work sought to review and characterize clusters of albinism in this country based on scientific literature search, newspapers, and websites. We identified and characterized 18 clusters, 13 confirmed by scientific studies. Seven clusters are in the Northeast region, with predominant African ancestry, and seven others in indigenous communities, particularly among the Kaingaing in South Brazil. Isolation and inbreeding associated with founder effects seem to be the most plausible explanation. Molecular studies and clinical classification are still limited. Their localization in deprived regions with poor infrastructure makes them particularly vulnerable to the social and clinical consequences of lacking melanin. We reinforce the need for a tailored approach to these communities, including appropriate medical care, social support, and genetic counselling.
... La prise en compte de la létalité importante de ces carcinomes doit être un des arguments les plus importants pour justifier l'intégration de l'AOC parmi les MTN. On peut dire qu'en Afrique l'albinisme est un véritable problème de santé publique [23], une urgence médicale et sociale selon Murray Brilliant, l'un des spécialistes mondiaux de cette affection [12]. Il existe également dans ces pays quelques cas de personnes albinos possédant soit une peau brune [29], soit une peau rousse [31] ne développant pas de cancers cutanés en raison de la présence de pigments photoprotecteurs. ...
Résumé
L'albinisme oculocutané (AOC) est une affection génétique qui, spécialement en Afrique subsaharienne, devrait être considérée comme une Maladie tropicale négligée (MTN). Le développement de cancers cutanés est la complication majeure chez les sujets albinos, aboutissant très souvent à leur décès. Cette létalité est bien connue et a été signalée dans de nombreuses publications médicales.
Dans ces pays, les personnes albinos font très souvent l'objet de discriminations culturelles, sociales, médicales, morales et économiques. La personne albinos est considérée comme un « Africain blanc », une créature intermédiaire entre les humains et les esprits/génies, dotée de pouvoirs innés pouvant faire le bien et le mal. Cette particularité a fait du corps de l'individu albinos l'objet de mutilations, de violences sexuelles et/ou de crimes rituels en vue d'utiliser certains organes pour la préparation de talismans supposés porter chance, santé et prospérité.
Sous l'influence d'ONG internationales et d'associations africaines de personnes albinos, francophones, anglophones et lusophones, les instances de l'ONU, l'OMS (Organisation mondiale de la Santé) et l'UNESCO (United Nations Educational, Scientific and Cultural Organization) ont réagi. Le 13 juin 2013, une résolution pour combattre ces agressions et discriminations a été votée. Dès lors, cette date est devenue la « Journée internationale de sensibilisation à l'albinisme ». Elle est fêtée avec éclat et panache, en particulier par les nombreuses associations des pays d'Afrique subsaharienne.
L'OMS vient d'ouvrir en juin 2022 un cadre stratégique pour le contrôle et la gestion des MTN se manifestant principalement au niveau de la peau. Bien que ce projet soit limité actuellement aux dermatoses de nature infectieuse, nous développons dans cette tribune notre plaidoyer pour l'intégration de l'AOC parmi les MTN.
... Beyond the physical attributes, individuals with albinism often face unique psychological challenges that can impact their emotional wellbeing, self-esteem, and social interactions. 27 While the physical manifestations of albinism have been extensively studied, the psychological impact of this condition remains an area of limited research. That why is important to discuss of psychological effects associated with albinism and explore the psychosocial challenges faced by individuals with albinism. ...
... Individuals with albinism may encounter teasing, bullying, and exclusion, which can lead to social isolation, anxiety, and depression. 27 ...
Background
Remarkable is the mind‐skin connection, that lies in the profound impact that mental health can have on the skin and specific skin diseases on the mental health. This intricate relationship gives rise to a burgeoning field of study known as psychodermatology, which is a rapidly evolving field that explores the intricate relationship between dermatological conditions and psychological factors.
Aims
In this article we summarize some of these diseases, as vitiligo, alopecia areata, psoriasis, acne vulgaris, albinism, rhinophyma, hidradenitis suppurative.
Materials & Methods
We searched on databases like PubMed, Scopus, Web of Science and analyzed scientific articles to summarize information needed for this review. We conducted qualitative content analysis to summarize the main results reported by different authors regarding the aimed topics: vitiligo, albinism and the others secondary psychiatric disorders described in this article.
Discussion
Skin is unquestionably the most visible organ of the human body; appearance is greatly influenced by it. An individual's physical and emotional wellbeing depend on having healthy skin, which is an essential element of a person's sexual appeal, sense of fulfilment, and self‐confidence.
Conclusion
Psychodermatology recognizes the bidirectional interplay between the mind and the skin, emphasizing the importance of addressing the psychological impact of dermatological disorders to improve patient outcomes. Secondary psychiatric disorders are under classification in psychodermatology, along with psychophysiological disorders and primary psychiatric disorders.
... Its incidence in Europe is 1 in 20,000 and as high as 1 in 1000 in some sub-Saharan populations. 1 Human albinos have lower than normal visual acuity. On average, they can see at 20 m what a pigmented individual sees at 80 m. ...
Purpose:
Human albinos have a low visual acuity. This is partially due to the presence of spontaneous erroneous eye movements called pendular nystagmus. This nystagmus is present in other albino vertebrates and has been hypothesized to be caused by aberrant wiring of retinal ganglion axons to the nucleus of the optic tract (NOT), a part of the accessory optic system involved in the optokinetic response to visual motion. The NOT in pigmented rodents is preferentially responsive to ipsiversive motion (i.e., motion in the contralateral visual field in the temporonasal direction). We compared the response to visual motion in the NOT of albino and pigmented mice to understand if motion coding and preference are impaired in the NOT of albino mice.
Methods:
We recorded neuronal spiking activity with Neuropixels probes in the visual cortex and NOT in C57BL/6JRj mice (pigmented) and DBA/1JRj mice with oculocutaneous albinism (albino).
Results:
We found that in pigmented mice, NOT is retinotopically organized, and neurons are direction tuned, whereas in albino mice, neuronal tuning is severely impaired. Neurons in the NOT of albino mice do not have a preference for ipsiversive movement. In contrast, neuronal tuning in visual cortex was preserved in albino mice and did not differ significantly from the tuning in pigmented mice.
Conclusions:
We propose that excessive interhemispheric crossing of retinal projections in albinos may cause the disrupted left/right direction encoding we found in NOT. This, in turn, impairs the normal horizontal optokinetic reflex and leads to pendular albino nystagmus.
... Albinos, therefore, suffer a great deal of health risks, which are often left untreated due to the prejudice they are victims of. [11][12][13][14] Igwebuike denotes and connotes community, fellowship, caring, other-regarding and humaneness, as earlier noted. It emphasises the claim that the humanity of the individual is most adequately realised in the shared communal world that invites everyone to a life of concern for the well-being of others. ...
In this short piece, we introduce the Igbo concept of Igwebuike and explain its relevance for building a more inclusive healthcare. We provide two examples of how igwebuike can make healthcare more inclusive. We assert that it can be used to include two groups of people who are routinely discriminated against in the African continent, namely: LGBTQ+ individuals and people with albinism.