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Albinism- A genetic disorder, not a curse

By Vision Reporter

Added 5th July 2009 03:00 AM

IT is speech day at a prominent daycare and nursery school in Kampala. Parents wait to applaud their children as they struggle to outshine each other in their presentations.

IT is speech day at a prominent daycare and nursery school in Kampala. Parents wait to applaud their children as they struggle to outshine each other in their presentations.

By Juliet Waiswa, Elvis Basudde and Irene Nabusoba

IT is speech day at a prominent daycare and nursery school in Kampala. Parents wait to applaud their children as they struggle to outshine each other in their presentations.

Sometimes, the children’s voices completely go off-key and many forget their lines when it comes to skits. Nonetheless, the performances are thrilling. Among the children is five-year-old Haggai, who attracts everyone’s attention.

Hanging onto his teacher’s hand, Haggai seems scared of the people. The teacher keeps reassuring him, but he keeps shying away, covering his eyes with his elbow.

After gathering courage, he cannot not look straight into the audience due to the glare of the sun. He uses his palm to shield his eyes.

One child in the audience shouts: “Laba omuzungu” (There is a White child).
Her elder sibling corrects her: “Oyo si muzungu, oyo namagoye” (She is not a White, but an albino).

Understanding Albinism
Dr. Vincent Karuhanga of the Friends Polyclinic in Kampala says albinos have fair white hair and skin and reddish eyes due to an inherited genetic condition where they have a partial or total lack of melanin, the pigment, which gives a natural dark colour to the skin, hair and eyes.

He says the low levels of melanin gives one a very light complexion and white-blonde hair.

“We are black because our skin, eyes and hair have a rich black pigment called melanin. The bazungu (white) are white because they have less of it. The amount of melanin determines how dark one will be.

“The principal gene which results into albinism prevents the body from making the usual amounts of melanin,” he adds.
The condition, Karuhanga says, is known to affect mammals, fish, birds, reptiles and amphibians.

Types of albinism
According to www.albinism.org, while most people with albinism have very light skin and hair, not all do. “There is oculocutaneous albinism (OCA), the most common one, which involves the eyes, hair and skin and ocular albinism (OA), which is less common.

It involves the eyes, while the skin and hair may appear similar or slightly lighter than that of other family members,” it says.

Causes
An online encyclopaedia says most forms of albinism are a result of the biological inheritance of genetically recessive genes from both parents of an individual. In rare cases, the site states, the genes can be inherited from only one parent.

“Chances of offspring with albinism resulting from the pairing of an organism with albinism and one without albinism is low,” the site says, adding: “However, because organisms can be carriers of genes for albinism without exhibiting any traits, albinistic offspring can be produced by two non-albinistic parents.”

The website says albinism usually occurs with equal frequency in both genders.

“An exception to this is ocular albinism because it is passed on to offspring through X-linked inheritance. Thus, males more frequently have ocular albinism since they do not have a second X chromosome,” the website notes.

To avoid giving birth to albinos, it is advisable to carry out a genetic test. Unfortunately, this kind of test is not available in Uganda.

A disability?
Karuhanga says the albinostics are like other people with normal growth and development. Albinism by itself does not cause mortality though the lack of pigment is an elevated risk for skin cancer and numerous visual problems.

“They are normal and should not be considered disabled. They are only stigmatised,” he says.

Research shows that about one in 17,000 human beings has some type of albinism, although up to one in 70 is a carrier of albinism genes.

In East Africa, every one in 3,000 children born is an albino. There are about 150,000 albinos in Uganda and about 400 have so far been registered under their association, the Uganda Albinos Association (UAA). It is believed that many are out there hidden due to stigmatisation.

Jude Sekyanzi, the head of the association, says albinism carries a lot of stigma and superstition, with some people referring to it as a curse or bad omen.

“Many children are killed at birth,” Sekyanzi, a second-year student of industrial and organisational psychology at Makerere University, says.
“The problem starts with our parents.

After giving birth to us, they think they have produced ghosts. The male parents usually tell our mothers that their families do not give birth to such offsprings.

We are brought up with low self-esteem. Many of our colleagues do not go to school,” Sekyanzi says.
With the popular belief that albinos do not die but just disappear, Sekyanzi says some of their colleagues disappear and no one asks for their whereabouts.

Recently the media was awash with stories on albino murders in Tanzania and how it was spreading to neighbouring countries, where the law is still lax.

Over the past year, over 40 albinos have been murdered in Tanzania and 10 in Burundi. Police sources suspect albino limbs and organs are smuggled across the border into Tanzania and sold to witchdoctors.

Fourteen-year-old Umaru Mawejje, a Primary Six pupil at Trinity Primary School, says he is often intimidated on his way to school by people who usually ask for his urine.

“Some people even threaten to sacrifice me if I do not greet them,” Mawejje says.
Sekyanzi says UAA aims at creating awareness on the plight of albinos, both locally and internationally to prevent the violation of their rights.

“The association will also help push for representation of albinos in government’s social and economic programmes. We are politically, socially and economically discriminated against.

That is why we are asking for a seat in Parliament Ssekyanzi regrets that the Government has not come out to strongly condemn the albino murders or promote their rights.

However, Herbert Baryayabwa, the commissioner for disability and elderly in the Ministry of Gender, Labour and Social Development, says albino murder in Uganda ‘is not worrisome as it is in Tanzania’ and assured albinos of Government protection.

However, Baryayabwa says they have observed that albinos are still marginalised.

“We have looked at their problems and we will give them information on how to live a healthy life. They are now categorised among persons with disabilities,” he says.

Baryayabwa says they also want to ensure that albinos benefit from Government programmes such as universal primary and secondary education and Bonna Bagaggawale.

Unfortunately, Sekyanzi says, after the registration of the NGO, he has received threats from people, saying it affects their work. But in his own words, “the struggle continues.”

Challenges of albinism
As Haggai’s teacher reveals, his shyness results from the fact that his parents kept him indoors to protect him from the sun.

“Many parents are so protective of these children because they have problems with their eyes and also suffer skin burns from the sun’s ultraviolet rays.”

Karuhanga explains that since melanin protects the skin from the sun’s ultra-violet rays, people with albinism are prone to sunburn.

“They should take precautions to avoid damage to the skin. This involves wearing sunscreen lotions, hats and protective clothing,” he says.

Karuhanga says lack of melanin in the eyes also results into eyesight problems since the eyes cannot develop properly without this pigment.

“People with albinism are legally blind because photoreceptors (cells in the retina that detect light) get oversaturated with light, sending confusing messages to the brain,” he explains.

An internet site on albinism substantiates that people with albinism always have problems with vision (not correctable with eye glasses) and many have low vision.

“The degree of vision impairment varies with the different types of albinism. However, some people with albinism have sufficient vision to drive a car,” the site reveals.

Albinism- A genetic disorder, not a curse

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