The International Volunteers for the Protection of Albino and Children (IVPAC) is a Canadian non-profit organization founded by Andre B. Mulumba .This organization was registered in Toronto, Ontario on June14 2010. IVPAC cares about albinos and children in Africa and in the world. Our main mission is to fight against albinos and children persecution, even discrimination.

In Africa and in some other countries of the world, albinos are considered as second class citizens and are in desperate social, economic and tragic situation just for being born albinos and looking different. Our organization is a result of what many of us listen on the radio, see on television, and read in the newspapers and magazines about the living conditions of albinos and children in Africa and around the world. We care about the well being of albinos and children in Africa and around the world and stand against their discrimination and persecution.

• To advocate for the protection of albinos and children in Africa and in the world from any form of discrimination and persecution.
• To help out all albinos and children in Africa and in the world to get better education and health care.
• To stop the persecution and discrimination of Albinos and children in Africa and in the world

IVPAC objectives are:

• TO PROMOTE THE RIGHTS OF ALBINOS AND CHILDREN IN AFRICA AND IN THE WORLD WITHOUT DISCRIMINATING THEM BECAUSE OF THEIR RACE AND RELIGION.
• TO PROVIDE SUPPORT AND RESOURCES TO ALBINOS AND CHILDREN IN AFRICA AND IN THE WORLD TO ENABLE THEM TO RECEIVE EDUCATION AND MEDICAL SUPPORT REGARDING THEIR GENETIC CONDITION.
• TO PROMOTE THE WELBEING OF PERSONS DISADVANTAGED BY DISABILITY AND POVERTY BECAUSE OF THEIR ALBINISM IN AFRICA AND IN THE WORLD.
• TO CONDUCT A NATIONAL AND INTERNATIONAL EDUCATION CAMPAIGN TO EDUCATE THE POPULATION IN AFRICA AND IN THE WORLD ON THE ISSUE AND GENETIC CAUSES OF ALBINISM.

About Albinism
Albinism” means a decrease in or the absence of melanin, the protein necessary for the pigmentation of our skin, eyes and hair. People with albinism have little or no pigment in their eyes, skin, or hair. Melanin is a chemical that colors our skin, eyes and hair. Therefore, people with albinism lack pigmentation in the skin, eyes and hair”. Despite its questionable origins, the word is commonly used throughout the English language. It is used to refer to a grouping of people with inherited conditions in which an altered copy of a gene does not allow the body to produce the usual amount of a pigment called melanin. Melanin is coloring agent that has gifted humanity with the notion of race, is a protective pigment that plays a major role in absorbing ultraviolet (UV) radiation from the sun. People with a large amount of melanin in their skin are generally highly resistant to the effects of UV radiation, while, conversely, albinos highly susceptible to UV radiation, and consequently to skin cancer and low vision.

1. Low vision
People with albinism always have problems with vision (not correctable with eyeglasses) and many have low vision. The degree of vision impairment varies with the different types of albinism and many people with albinism are “legally blind. Vision problems in albinism result from abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain. In this particular population, according to studies, visual difficulties have been reported to occur in 100% of people with albinism. Due to lack of retinal pigmentation required for the normal development of visual system, the individuals experience photophobia, myopia and other visual problems.

2. Skin cancer
Melanin protects the skin and the back of the eye, called the retina, from the harmful effects of ultra-violet light. Without melanin, the sun burns the eyes and the skin very easily. Lack of melanin predisposes this population to severe skin damage. The multiple skin cancers present a horrific appearance and the condition is often misunderstood to be contagious. As a result, albinos face isolation and exclusion from other group activities, for example, in school and work place. The majority of these lesions are in the most sun-exposed parts of the body such as face, ears, neck and shoulders. Albinos develop blisters when they stand in the sun, always they have to work under the shelter, they can’t work in construction because their bodies do not contain the pigmentation to protect them against the sun.

Albinism in Africa

The etymology of the word albinism is linked to Africa, to the ethnic gaze of early visitors to the black continent. The word, which describes the inherited conditions of melanin deficiency, traces its origins back to Portugal’s colonial interests in Africa. First used in 1777, the word was employed to describe white-spotted West Africans encountered by colonial explorers. According to report, Portuguese explorers were confounded by the apparent existence of two distinct African races, and as a result distinguished between Negroes and Albinos. Thus, it was the exotic possibilities of otherness, and the flawed vision of the ethnic gaze, that derive the word albino.

There are a good number of albinos all over the world, 1 in 20.000 is affected by albinism in Europe and in America. In Africa, Tanzania has the highest rate in the world: 1 in 3000 affected. Recently the problem has been much realized facing the albino’s society living in Africa: in Tanzania, Burundi and most of other African countries. Apparently, Africa has a higher prevalence of people born with albinism with one per 4,000 to 5.000 persons comparing to countries like Denmark with one in 6,000, one person in 17,000 in USA. Albinos make up about one in 4,000 in South Africa, one in 5,000 in Nigeria and one in 1400 in Tanzania according to a 2006 review published in the BMC Public Health and Tanzania has a population of 40 millions. That would suggest an albino population of about 200,000.

Traditionally, it is a taboo to give birth to an albino in many African countries. Parents of albino children may be accused of having invoked the wrath of God, or their ancestors. In tradition belief, an albino child was often seen as a bad luck or the result of witchcraft, and was often killed soon after birth. These days the consequences are less drastic, but they can be bad enough.

The mother may be accused of infidelity and the father may even abandon his family because of the shame of having an albino child. Some people believe that having an albino in Africa is the result of bewitchment in a family. Suspicion about inter-racial relationship may come into play and the albino born baby can just be killed by the midwife or a member of the family right after birth. In many African societies, albino used to be killed or abandoned at birth or even offered in ritual sacrifices because of traditional belief and a total misunderstanding of albinism genetic origin (Zimbabwe, Tanzania, Kenya, Benin, Mali, Uganda and Nigeria).

John Makumbe, albino himself and professor of political science at the university of Zimbabwe and president of the Zimbabwe Albinos association-a non-government organization (NGO) based in Harare puts the number of people with albinism in his country at about 300,000. John says that he was nearly killed at birth. The midwife thought his mother was misbehaving with some white missionaries around his area and many times people refer to him as white person. “Initially, it was a form of insult, now it has become a joke”. Some of his friends always say to him, “you white man, have you got a farm, we want to invade it,” in reference to the farms occupation that began in Zimbabwe in 2000, to correct imbalances in land ownership that dated back to the colonial era. These practice are still going on today in some countries, Here are some examples:

Kenya
Among the Maasai, a man would show his disapproval of his wife having an “illegitimate” child by placing the said baby at the entrance of the kraal so that the cows would spare it if it was his or trample and kill it instantly if it was no his. If a Maasai woman gives a birth to an albino child, it was denied breast milk and exposed to harsh conditions. It is still hard even today to convince a Maasai man that he is the biological father of an albino son. Indeed even the local community where he grows up always suspects that the mother must have been having an affair with a white man.

Chad
Some ethnic groups eliminate the albino child by secret practice. The birth of an albino being in this situation is described as: birth of false, not a real person and a sign that a sort of punishment is to befall the family.

South Africa
A visitor to SA realized that there were many people with albinism on the streets in that country's cities because they had been rejected and cast out of rural societies. Research in SA had come across anecdotal evidence that black children were reluctant to share food with albino classmates. Mothers of albino children took about 9 months to accept them fully. ``They keep a distance that's not normal between mother and child and talk to them less”.

Zimbabwe
In Zimbabwe, about fourth-fifths of albino belong to the majority ethnic group, the Shona. If you ask a local Shona what is the word “Sope” means, most Zimbabweans are likely to tell you that it is something magical, inhabited by powerful and bad spirits. Albinos are called “Sope” in Zimbabwe and survey shows that 66% of albinos come from disintegrated families here.

The father often divorces the mother laying the blame on her with various accusations. In most cases the mother is held responsible for the sickness and accused of having slept outside in a forbidden place or of being unfaithful to her husband. In rural Zimbabwe in the past, new born albinos were sometimes killed right at birth. Although the practice is less common today, it is still practiced. Albinos are often believed to have evil or good powers, supernatural strength and can predict the future or have spell to bring sorrow or wealth. Ambivalence and ambiguity of a white child born by two black parent fuel occult belief and practice in Africa about albinism. A recent increase in the incidence of rape of albino females by HIV infected males in Southern Africa countries like Zimbabwe and South Africa highlights one particular aberrant neurosis projected into albino body. According to this troubling African fallacy, sex with an albino is said to cure HIV.

Albinos persecution in Africa

Mariam (28) from Ntobeye Village in Ngara district, Kagera region, was lucky enough to have survived after she was invaded last year at her home by two unknown people who entered through the window while sleeping and chopped her both arms. She cried for help and neighbours turned up on time and the invaders disappeared with one of her arm, while the second one was left hanging and had to be cut off at the hospital as could not be re-attached. By then she was six months pregnant and the bleeding was threatening not only her life but also her unborn baby, who is now doing well with her hand caped Albino mother. She might have survived this attack, but the real threat of Skin Cancer from constant direct exposure of her vulnerable skin remains with her to date, and this further hand caps her living and participation in the economic and social systems in her society.

There have been since 2007 albinos killing in Burundi and in Tanzania as the albino organs, particularly genitals, limbs, breasts, fingers and the tongue are in high demand by people involved in mining and fishing activities in the Lake Victoria Zone, especially Mwanza, Shinyanga,, Kagera and Mara regions.

Gold mine owners visit witchdoctors to get information on the digging places and on the directions they have to dig to find as much gold as possible. Some fishermen believe that by throwing albino hair in the fishnets, they will get more fish and the biggest one that day. Both groups have to visit the so called witchdoctors to drink albino blood, potions made from albino body parts or to get albino hair. It is said that even politicians visit witchdoctors to get elected as MPs.

Since 2007, over 100 albinos have been killed in Tanzania in Mwanza region and 20 other have been slain in Burundi, sparking widespread fear among albinos in East Africa. At least 10.000 other have been displaced or gone into hiding since the killings began. Attackers chop off limbs and pluck out organs to sell to dealers, who in turn sell them to witchdoctors. In Tanzania and Burundi for example, albinos are often betrayed by husbands, relatives or friends lured by payment of up to $3000 for an albino limb and $75.000 for a full set of albino body parts. Therefore, only rich businessmen and politicians can afford to visit witchdoctors, and for what: To find gold and to get elected.

Causes of this macabre killing:
This killing is driven by the belief that the body parts of albino people possess magical powers capable of making people riches if used in portion produced by witchdoctors. A recent survey suggests that 93% of Tanzanian believe in witchcraft, the highest percentage in Africa.The horror business is even now crossing the borders (Congo, Burundi and Kenya).

Investigations by the media and police reveal that there is a high demand for albino human skin in Malawi, Zambia, Mozambique and South Africa where it fetched $2,400 (about Shs5.4 million) to $9,600 (about Shs21.6 million) depending on the age of the victim. This business is even now crossing other borders.

A 35-year-old man from around Lake Tanganyika was accused of trying to sell his 24-year-old wife to Congolese businessmen for $2,000 (about Shs4.5 million) while in Mwanga district a mother was also accused to have sold her albino baby girl to a group of men who slaughtered her and drunk her blood.

In August2010, Tanzania police arrested a Kenyan man for trying to sell his best albino friend, a 20 years old man for US 250.000 in Tanzania. He had been sentenced to 17 years in prison.

Cases similar Mkwama’s and Mirriam’s where people disappear mysteriously, only for their bodies to be discovered several days later minus various parts are so many in Africa that they are treated as routine crimes. Many albinos in Africa are simply killed due to superstition and ignorance about their skin condition that is caused by a complete lack of pigmentation, or more simply said they die “because they are black who have white skin “Wherever they live, they live in fear.

The mistaken belief that albinos body parts have magical powers has driven thousands of Africa’s albinos into hiding, fearful of losing their lives and limbs to unscrupulous Tanzanian dealers who can make up to 75.000 selling a dismembered set of albino body parts-including all limbs, genitals, ears, tongue and nose, buyers use the parts as talisman to bring them wealth and good fortune.

Besides the horrible killing, African albinos suffer discrimination against and face discrimination in all aspect of life.Much of the social discrimination appears to stem from the communities' lack of education about albinism. There is limited awareness of its genetic inheritance and therefore, traditional myths and superstitions are numerous: For example, some of these beliefs link albinism with conception during menstruation or consider albinism as a punishment from God for an ancestor's wrongdoing.

Due to this socially rooted discrimination, the quality of life of people with albinism may be compromised. For example, they are more likely to drop out of school and face more difficulty in finding employment and marriage compared to the rest of the population. Furthermore, their family members may also experience discrimination from the community. In light of the traditional myths concerning albinism, mothers of affected children may be subjected to a great deal of stigma and psychological.

Most of these men and women are very poor. One of the main concerns is that many albinos cannot afford Sun Creams and proper clothing to be protected from the sun that will eventually kill them from skin cancer. Albino life expectancy is here 30 years with only 2% living behind 40.

STIGMA

There is growing evidence of social discrimination and stigmatization directed towards this population Along with their differences in appearance, a lack of knowledge about albinism in the community leads to such stigma. For example, the etiological beliefs about albinism continue to be heavily influenced by culture and superstition, rather than genetics.

Stigmatization stems from traditional explanations of albinism especially in the curiosity of their different skin colour. There is a great amount of stigmatization of albinos in schools in most of African countries from fellow students, teachers and even within their own families. Many families keep their children well hidden at home instead of sending them to schools because of the stigma attached to them. Those who do go to school, however, face continuing problem. Class mates may point and laugh at them and since this problem has never really been perceived and dealt with, adults frequently do the same and teachers lack knowledge on albinism. Needless to say, this causes extremely low self esteem amongst the too- white children. Furthermore, because albinos normally suffer from low vision, they may have problem reading and therefore learning. In a country like Tanzania and Burundi, many families are too poor to afford the eyeglasses these children need.

After school, follows getting a job and starting a family. Life does not fall easily into place here, either. Albino job applicants seem to meet with an invisible barrier, no-one ever has any work for them, Women who try to manage by selling vegetables by the roadside, find that few customers will approach them - they are afraid that the pink skin and white, yellowish hair is somehow contagious. Albinos are seen as somehow unclean, and people also refuse to shake hands with them or eat from the same plate with them.

Because they think albinism is contagious and hereditary, few people want to marry albinos, especially women. In recent times, however, many men have wanted to sleep with albino women - a new rumour says it will cure them from HIV. As a result, several of these women have been raped in Zimbabwe and South Africa. While albino men usually manage to find a wife eventually, women are likely to remain spinsters or become single mothers.

 

Major Challenges Facing Persons with albinism in Tanzania, Burundi and Rwanda

• The horror of a rapidly growing industry in the sales of albino body parts.
  Albino organs, particularly genitals, limbs, breasts, fingers and the tongue are in high demand by people involved in mining and fishing activities in the Lake Victoria Zone. The murders are the result of seemingly conflicting beliefs spread by witchdoctors.
  These witchdoctors are still consulted by many of people in the named regions. Some fishermen believe that, if they weave the red hair from an albino into their nets, fish will be attracted by the golden glimmer. Miners for gold, rubies and tanzanite are reported to pay large sums for magic amulets, which they wear around their necks or strapped to their arms and which are made up with a potion mixed from albino body parts. Others are said to bury the bones of albinos in the ground they are digging.

• Lack of Low vision aids
  Lack of glasses, magnifiers, and specialized computer equipments.
  This results in extreme difficulty in completing educational programs, resulting in chronic poverty and unemployment. By the end most African albinos end - up living in rural regions with no jobs.

• Lack of protective sunscreen lotion, wide brimmed hats and proper clothing resulting in epidemic rates of death due to preventable skin cancer. The lack of melanin in the skin creates high risk for skin cancer. Average life expectancy for persons with albinism in Tanzania is 30 years, with only 2% living beyond 40 years.
  In western countries persons with albinism have the same life expectancy as the general population.

• Widespread social and economic discrimination
  there is long standing and widespread lack of public awareness on albinism. Powerful myths surround albinism in Africa. Some of these are:

• People with albinism are evil or are a curse from God and will bring bad luck on the household. People with albinism never die - they simply vanish. People with albinism are born to black women who have slept with a white man.

The African Albino has 2 main social issues:

• 1. A society where they look drastically different                        2. A culture that believes in the occult

The African Albino has 2 main health issues:

• 1. Protection from harmful sun rays                                           2. Protection from witchdoctors

WHAT IVPAC DOES TO HELP

• Providing free healthcare (skin and eye): Provide free vision and eye care of people with albinism
  Indeed, with appropriate skin protection, such as sunscreen lotions rated 20 or Higher, and wearing opaque clothing, the life-threatening skin cancers can be avoided. These products are usually beyond the pockets of albinos since most of them are unemployed.

• Distribution of preventative eyeglasses, sunscreens, and protective clothes
  (ex: Long sleeve cotton shirts, pants, protective hats)
  Medical studies show that albinos have problems with vision as a result of abnormal development of the retina, and abnormal patterns of nerve connections between the eyes and the brain. Therefore they need special glasses to protect them, and to help with reading. But these are often very expensive.

• Public education

In Sub-Saharan Africa, there has been a long standing and widespread lack of public awareness about albinism. Powerful myths surround albinism, including these:

• Albinos never die - They simply vanish - They are not human - They are ghosts.

• Albinos are born to black women who have slept with a white man, or a European ghost. (Most women giving birth to a baby with albinism are abandoned by the father of the child. In most cases, neither parent knows that the father always carries the gene as well as the mother.)

• Albino is a curse from the gods or from dead ancestors. As a result, touching a PWA will bring bad luck, sickness or even death.

As a result of these myths, many families do not bother to educate their children with albinism. Also, employers avoid hiring albinos due to fears that their customers and staff will "catch" the condition, or that food would be contaminated. Sadly, in some social settings, many albinos are not offered the same kind of social & physical contact, due to this kind of misinformation. Much of social discrimination appears to stem from the communities lack of education about albinism’s etymology. There is limited awareness of its genetic inheritance and therefore, traditional myths and superstition are numerous.

Some African communities believe that albinos are a disaster, while others mistakenly think albinos are mentally retarded and discourage their parents from taking them to schools, saying it is wasting of money. Due to lack of education, chronic unemployment among African albinos is very high because there are illiterate. They are forced into menial jobs, exposing them to the sun and skin cancer. Those who manage to finish schools face discrimination in the work place and are never considered for promotion. IVPAC makes sure albinos children are send to school like other children without discrimination.
IVPAC educate through media, informational, brochures, cultural exercises on albinism. We teach people with albinism and their families how to protect themselves, from cancer even if they lack resources for sun block and glasses.

Our volunteers explain the community in a traditional scenario and local dialects that a person with albinism is not a magical person with supernatural powers, but just a regular human being who is born with a genetic disorder that causes their skin, eyes and hair to lose their regular pigmentation or the melanin that gives them color. Example: If people in Africa could understand or be taught from a tender age in schools that the source of albinism is scientific and that it occurs in all races, animals and plants, the idea or false propaganda spread by witchdoctors would most likely disappear or be shunned by the general public as fictitious.

Albino would also learn to take care themselves by staying out of the sun, by understanding that they are not protected with the melanin like other black Africans, making them extremely susceptible to skin. Studies show that people with albinism in Africa don’t fully understand their condition. Our team of volunteers will travels from village to village and from town to town to teach and doing community outreach.
We organize a team of mobile traveling volunteers for education campaign in villages, schools, talk with traditional chiefs, church leaders and government officials. IVPAC prevention team also teach albinos find indoor employment by teaching them skin care tips, including using protective hats and long-sleeved shirts.

In Burundi and Rwanda, IVPAC runs a mobile skin care clinic where a medical doctor and a nurse visit villages to check the skin of people with albinism and provide education on protection from UV exposure.

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