Geography and Development across the World
Albinism is not contagious. Albinism is widespread mainly in the sub-Saharan area but the highest percentage is present in Tanzania. Other states include Zimbabwe, Malawi, Zambia, Ghana, Liberia and others. The presence of people with albinism in the world is varied but, in some areas of the world, their percentage is higher than, for example, the United States or Europe. The people with albinism (PWA) in the United States are 1:37000, but in Zimbawe, for example, the situation is clearly different: one person in 4000 is albino while in Tanzania, the state with the highest presence of PWA, the datas attest that one person every 1400/1500 is albino.
It is not well known why in certain countries the percentage of people with albinism is higher than in others, in the West the spread of albinism is low but in sub-Saharan countries it is higher and, according to numerous researchers and field-work datas by them, one of the causes main would be inbreeding or incest. Consanguineous matrimonial arrangements increase the incidence of albinism especially in very small groups or popoluations, this causes an increased chance of developing this condition.
Albinism and Genetics
Albinism is a inherited but not a contagious disease, it is a genetic anomaly due to the change of one of the fourteen genes predisposed to the production of melanin whose absence can be total or partial causing various disorders from the first days of life especially in areas where the sun’s rays are very strong. The term “albino” derives from the Latin “albus” which means “white”, a term that goes to highlight the aesthetic characteristics of those affected. This genetic disorder is responsible for the absence of pigmentation of the skin, eyes and hair and is visible from birth, causing great concern in the countries of greatest diffusion for the reasons we will see later. There are several types of albinism, as follows:
OCA: better known as Oculocutaneous Albinism and outlines a heterogeneous group of conditions that are the result of the genetic mutation of some genes causing hypopigmentation;
OA: Ocular albinism, is not very common and, when it is, it is widespread especially among males;
Albinism with HPS: Albinos with Hermansky-Pudlak Syndrome, this is an exceptionally rare condition which, in addition to the light color of skin, eyes and hair, causes bleeding and lung disorders.
Aestethic manifestation of albinism
In the countries of the sub-Saharan area, when a white child is born, a strong concern immediately begins, mixed with fear and misgiving due to numerous and unfounded beliefs, myths, superstitions and legends. People affected by albinism therefore differ, aesthetically, from their family branch and listed below are the most common types of albinism and how they manifest themselves.
- Type 1: This type is the most common, the skin is very clear, the irises are equally clear and the hair is the same;
- Type 2: less severe than the first case, the skin takes on a cream color, the hair tends to be yellow or very light brown;
- Type 3: known as Rufous Ocolucutaneous Albinism, hair tends to be red and irises tend to be darker;
- Type 4: very similar to type 2, type 4 is less common.
As mentioned previously, albinism is a non-contagious, it is a inherited condition that develops due to the mutation of some genes responsible for pigmentation and melanin production. But what are the genes responsible for this condition?
The TYR is a gene that produces an amino acid useful for several hormones including melanin whose mutation causes type1 albinism, the OCA2 is a gene that produces a protein whose mutation causes albinism of type 2, the TYRP1 gene produces an enzime which is responsible for type 3 albinism and the SLC45A2 gene responsible, the latter, for type 4 albinism It should be noted, once again, that albinism is not contagious and all people, of both genders, of different ethnicities, can be born albino as both the father and the mother can be carriers of the changing gene even if they are not person with albinism.
Can being albino be dangerous?
According to today’s society, being albino can increase the risk of unpleasant and serious situations, humanly and internationally unacceptable. Albinism is still seen with fear and prejudices, the children are excluded from the family or hidden and protected, in both cases the children will be excluded from society. They do not easily attend school because of the violence and harassment they are victims of every day, due to the problems that albinism also causes visually, they struggle to see on the blackboard or even to read or write and after a while they drop out of school.
Discriminated, stigmatized, abused, marginalized and vulnerable: they are people to be protected and not to be rejected, defined abnormal, sub-human or abnormal births, they are called with epithets including: Zeruzeru, ghost, Mzungu, white person and Nguruwe, pig, in Tanzania. In Zimbawe they are called Sope (inhabited by evil spirits) and in other regions Watu wenye ualbino, person with albinism. They struggle to find work because they are considered stupid or children of the devil, this causes a social, economic and cultural imbalance that leads to loneliness and rejection by one’s society; they cannot participate in agricultural work as sun exposure would cause serious damage to the skin and therefore are not considered an integral part of the community.
Albinism and Health
People suffering from albinism must face not only marginalization and rejection but also health-related problems including skin cancer due to the aggressive action of the sun’s rays on white skin, especially in tropical areas, actinic cheilitis, actinic keratoses but also visual problems including reduced sharpness, mystagmus (involuntary eye movements), photophobia (high sensitivity to light), strabismus, hyperopia and hypoplastic fovea. The exposure to UV rays is maximum and health, in such conditions, is immediately put at risk.
Witchcraft and Black Market
Albinos are considered children of the devil and are victims of physical and psychological violence but are also subject to false myths and superstitions that further aggravate their condition. Children are the most vulnerable as they are easy prey, naive and defenseless, faced with the threat of the black market. There is the belief that they are custodians of arcane powers and knowledge and, for this reason, they are kidnapped, tortured and killed in a brutal way and then sold at a high price. Their blood is used for the creation of amulets that will give luck to anyone who wears them, the organs are used for the creation of potions or they are also used for amulets. Albinos are frightened because their being clear predisposes a supernatural, divine or demonic belonging, they are thought to have knowledge related to the non-terrestrial world and that from their candid eyes you can see eternity. Traditional doctors, called Waganga Wa Keneji, have started labeling people with albinism to complete rituals or business.
Other false Myths
The belief that PWAs are anomalous or sub-human person but, in addition to these, there is the dangerous disclosure of other beliefs among various communities. Infanticide in areas of Tanzania, for example, is sadly known, children born with albinism are thrown into a lake that runs through the famous caves of Amboni, the parents of the child wait for the baby to emerge from the waters on the opposite side of the lake, if so, the child will survive but, unfortunately, there are no cases with a happy ending; in other areas the child is left in front of a gate set up for the cattle to exit, the gate is opened and, once again, if the child survives it will not be considered a child of the devil, in other cases people with albinism are sacrificed to divinity for mere ritual purposes.
Albinos are now subject to greater protection but this is still not enough, many, to avoid being kidnapped or killed, voluntarily move away to more “safe” areas such as the island of Ukerewe which has hundreds of people with albinism or shelters which, the latter, are considered less safe especially for children. The lack of knowledge, the accentuated presence of traditional beliefs and the belief in witchcraft still leads to marginalize all people with albinism, the biological and genetic cause is never taken into consideration because the person is automatically associated with albinism to the fruit of a demonic or divine power and not the mutation of some genes. There is still a strong misinformation about it that could be filled with lectures starting from the schools themselves or from the communities.
Myths, traditions, superstitions, extreme poverty, capitalism, lack of information and disclosure are at the basis of the marginalization and violence to which people with albinism are victims. It would be useful to spread awareness and correct education and information so as to understand genetic change and discard theories and superstitions. It is not known when the “hunt for albinos” began, most likely there is no precise period since the hunt against PWAs began with witchcraft and the occult, with the black market and all its dark forms of traffic. Albinos are people and it is precisely for this reason that the name PWA has spread because they want to be recognized as human beings, people and not as albinos. Their fragility and vulnerability must be protected, they are not custodians of magical, divine or demonic knowledge, they are people who want to attend school, work and have a social life.
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