Skin disorders are often misunderstood. Their treatment varies according to the disorder a person has and the treatment available to them. One of these disorders is albinism. According to the National Organization for Albinism and Hypopigmentation, albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes. Albinism occurs in all racial and ethnic groups throughout the world. In the U.S., approximately one in 18,000 to 20,000 people has some type of albinism. In other parts of the world, the occurrence can be as high as one in 3,000. Most children with albinism are born to parents who have normal hair and eye colour for their ethnic backgrounds.
Contrary to popular belief, there is no singular type of albinism. There are several types and each affect the patient differently. There is oculocutaneous albinism (OCA) which involves the eyes, hair and skin and there is ocular albinism (OA), which is much less common, involves only the eyes, while skin and hair may appear similar or slightly lighter than that of other family members.
People with albinism have to take greater care of their skin as their skin is very sensitive and if they do not have access to adequate skin protection may develop life-threatening skin cancers. Abongile, a Rhodes University student tells Tonic of her experience of living with disorder.
However, the potential threat the sun poses to them is nothing compared to what they face in the real world.
For centuries, people with albinism are at risk of isolation because the condition is often misunderstood. Social stigmatization can occur, especially within communities of colour, where the race or paternity of a person with albinism may be questioned. Furthermore, some communities have the misguided belief that they have special powers. Earlier this year, the Tanzanian government banned witch doctors in an attempt to curb the attacks on individuals living with albinism. The UN estimates that over 70 people in the last decade have had their limbs hacked off or killed for body parts.
In some parts of South Africa, people with albinism are still treated as social pariahs. The Albinism Society of South Africa has busted these ten myths about albinism in an effort to end their discrimination.
Myth: They are results of inbreeding or incest, that is, breed from closely related people, especially over many generations.
Fact: The body of people living with Albinism has little or no ability to produce the colour of the skin, hair and eyes. This colour is called “melanin”. It is a genetic condition, which means it can be passed from parents to their children, but no studies have shown that this is a result of incest.
Myth: Albinism is a punishment or a curse from the gods or ancestral spirits due to wrongs done in the family.
Fact: Albinism is a genetic condition that is passed on from parents to children. Many people are carriers of this recessive gene. Albinism is not a curse.
Myth: Body parts of persons living with albinism make potent charms that can make people rich and successful.
Fact: This is not true. It is a myth spread by witchdoctors in order to enrich themselves at the expense of others.
Myth: Drinking the blood of a person with albinism gives extra magical powers
Fact: This is not true. Persons with albinism are human beings like anyone else and do not possess any magical powers.
Myth: People with albinism are sterile.
Fact: This is not true. Persons with albinism are fertile and can have children like other people.
Myth: A person with albinism cannot have regularly pigmented children.
Fact: A person with albinism can give birth to regularly pigmented children if his/her partner is not a carrier of a similar recessive gene for albinism. The children may be carriers of the recessive gene but it will not be expressed in them.
Myth: People with albinism are not intelligent.
Fact: This is not true. Persons with albinism are intelligent and also perform well academically like other normally pigmented people. There are teachers, lawyers, politicians and musicians who are living with albinism.
Myth: People with albinism cannot see during the day but see well at night.
Fact: People with albinism have eyesight problems due to lack of ‘melanin’ pigmentation in the retina. They can see during the day and also at night, but they may either be short or long sighted and may need sight aids.
Myth: That the mother slept with a white man.
Fact: Children born with albinism may look ‘white’ due to absent or reduced pigmentation but are not products of cross race sexual relationships.
Myth: That people with albinism don’t die, they simply vanish.
Fact: All people with albinism die like other normally pigmented people. There’s no such thing as vanishing.