Factors of weather such as sunshine pose a great danger to albinos, just like their human neighbours have threatened their existence.
Recently, there were several demonstrations in Malawi by people with albinism protesting numerous killings of their colleagues
In addition to the demonstrations, Amnesty International also released a report blaming the Malawian police for failing to tackle a scourge fuelled by ritual practices.
The report reveals that at least 18 people with albinism have been killed across Malawi since November2014 in ‘unprecedented wave of brutal attacks”.
The report titled “We are not animals to be hunted or sold” painted a chilling picture of killings and fear, with the body parts of victims, including children, routinely hacked for use in witchcraft.
Just like in Malawi, the situation is also very common in countries such as Tanzania and Mozambique. They are not only slaughtered, their bodies are also exhumed when buried and this is because some people believe their body parts have charms and magical potions that bring wealth and good luck.
However, this is not the only problem they face, as the world celebrates International-albinism awareness day today experts speak out on other dangers albinos are exposed to in their daily lives.
What is albinism?
Dr. Edwig Nagabirwa, a skin specialist at Rita Health Care Services, Wandegeya in Kampala, says albinism is a genetic condition in which people born with albinism (albinos) lack melanin in their bodies. Melanin is a pigment that is responsible for producing or giving skin, eyes and hair colour. Although it is easy to identify black African albinos because of their skin is white without melanin, the condition affects people of all races.
The condition is characterised by reduced or absent melanin and because bodies of albinos are not able to make a normal amount of melanin, this explains why most of them have pale skin, hair or eyes. However, albinism does not affect their intelligence or their ability to perform other duties like any other human being.
Albinism is caused by a mutation in one of the several genes; each of the genes provides instructions for making one of several proteins involved in the production of melanin. Melanin is produced by cells known as melanocytes, which are found in one’s skin and eyes and a mutation in any of the genes may result in no melanin at all or a significant decline in the amount produced.
She says parents who give birth to children with albinism appear normal in terms of appearance with normal skin, hair and eye colour, but have genes both the normal and abnormal genes with albinism.
“Albinism is passed from parents to their children through genes, and both parents must carry an albinism gene to have a child with the condition. A couple with albinism genes will have quarter of their children born with the condition, although the other children may be normal,” she said.
The most at risk children to be born with albinism are those whose both parents carry the genes. This means each child has a 1 in 4 chance of having albinism. But if only one or neither of the parents is a carrier, then each child has lower chances for albinism.
People from a lineage with albinism have a 25% chance of being born with the condition if both parents are carriers of albinism.
Types of albinism
Dr. Edward Ogwang, skin specialist at Skin Specialist Clinic, Bombo Road says there are two categories of albinism.
The Ocular albinism type, which has three sub-types. Here, the person has normal skin, but it is the eyes that are affected. There is a reduction in the colouring ((pigmentation) of the iris, the coloured part of the eye and the retina, which is the light-sensitive tissue at the back of the eye. He says this disturbs sight.
He explains that the eyes are affected because melanin is involved in the process of development of pathways for sight/vision and that is why they cannot see properly. They have repetitive, uncontrolled and abnormal movement of the eyes known as Nystagmus.
“Without pigment, there is improper development of the eye, leading to poor vision, improper connection of the nerves and this explains why there is fear of the sunlight and they cannot see well in the broad day light,” he says
The other is Oculocutaneous albinism (OCA). This affects the eyes, skin and hair and it has over 10 subtypes. It is the commonest in sub-Saharan Africa. Here, there is mutation in the genes, affecting the process of melanin.
Myths about people with albinism
The condition is still profoundly misunderstood socially and medically. People associate albinism with strange beliefs and myths influenced by superstition, which foster their marginalisation, social discrimination and stigma.
Some of the misconceptions about people with albinism include:
- Their body parts are sacred tools one can use to obtain wealth
- people believe it is a punishment from God to produce children with albinism
- ·People believe that albinos do not die a natural death, they simply disappear, but the truth it, they die just like any other human being.
Other people believe that women who produce albinos laughed at an albino when she was expecting, while others believe the ancestors were angry with the mother when she was pregnant.
Dr. Nagabirwa says the majorities of the people with albinism have normal life expectancy, live up to their 50s if they do not get skin cancers. But even when they get the cancer and it is detected early, they get treatment and heal. Albinos can also live productive lives.
“All these misconceptions about people with albinism are wrong. Those who have become rich have worked hard or inherited their parents/relatives riches, not because they killed an albino,” she said.
On the other hand, Ogwang says the birth of a child with albinism has long term effects on a mother and child, mostly psychological effects and more so, depression.
He says most mothers of children with albinism are unhappy and reluctant to have close contact with their children, because they are in denial and this can lead to delayed milestones in a child’s development and life.
Due to lack of melanin, most of them have rough skins with blackish spots, resulting from sun burns, rough spots on the lower lip (medically known as actnic cheilitis), skin lesions mostly induced by the sun and premature skin ageing, which damages the collagens and the skin begins to sag, especially at the back of the neck.
They also have visual problems characterized by crossed eyes, sensitive to light, impaired vision or blindness, involuntary rapid eye movement and premature skin ageing.
Dr. Ogwang says skin cancers are a major risk associated with albinism and is one of the major causes of death among albinos in Africa, especially if the cancers are not diagnosed and treated early.
They are at a higher than average risk of skin cancer because their skin has no natural protection against the sun, making them very sensitive to ultra-violet radiation, which predisposes them to skin cancers.
Some of the cancers that affect them include basal cell carcinoma, melanoma, keroto acenoma and squamous cell carcinoma which is the commonest form of cancer. This type of cancer is characterized by uncontrolled growth of abnormal cells arising in the squamous cells, which compose most of the skin’s upper layers (the epidermis).
“With this cancer, the person with albinism gets scaly red patches, open sores, or warts which may crush or bleed,” he says.
He says to prevent the cancers, they need to avoid direct contact with the sun, especially one between 11: 00am to 4: 00pm because it is very sharp and can affect them.
Ogwang says there is no cure for albinism, adding that treatment can only relieve symptoms and prevent damage. He says prevention of extreme dangers includes wearing protective clothing such as long-sleeved shirts, and trousers for men, and long sleeved blouses, dresses and skirts for women.
“They also need sunglasses to protect their eyes from the rays, shades to protect their eyes from the sun, and hats to prevent direct sun rays on their heads. The best prevention mechanism is to stay away from the hot and sharp sun,” he advises.
He, however, says in our setting, people with albinism do not thrive well. This is because they are not financially stable and accessing treatment is not easy. For instance, a bottle of sun screens costs sh65, 000 to sh70, 000, which most of them cannot afford.
Treatment on albinos
When an albino has got a cancer on their skin, different interventions are done to get rid of it, there is use of nitrogen to freeze out the cancers, use of some medications to cut out the cancers.
Ogwang says sometimes surgery depends on the location of the cancer on the skin and the part of the body.
The procedure involves removal of skin and examining it. “Removing an small tumour costs about sh400,000, while big tumours require surgery known as mohis surgery, which goes for about sh20m. The early detection and prevention of the formation of the tumours, the better,” says Ogwang.
“People with albinism need a lot of routine skin checkups, especially if there is a lot of exposure to the sun. A person can go for checkups at least three times a year, but if an albino notices any form of lesion, he or she has to go for checkup as soon as possible, because this could be the beginning of skin cancer if ignored,” he advises.
When going into marriage, it is also important for the couple to test and ensure both of them do not have the genes, and marriages between people from the same clan, villages and communities are not encouraged, because albinism is common among communities that marry from each other.
Though there are no readily available statistics in Uganda or exact figures on how many people are born with albinism in Uganda, but few studies that have been done worldwide indicate that 1/4000 people in Sub-Saharan Africa has albinism.1 for every 20,000 people worldwide has albinism