Living With Albinism
BY AWAKE! WRITER IN BENIN
“WHENEVER I fill in a form requesting information about my race, I always mark ‘Black,’” says John, “even though I am whiter than most who check ‘White.’” John, a West African living near the border between Benin and Nigeria, has albinism—a genetic disorder in which one’s eyes, skin, or hair (in some cases one’s eyes alone) have little or no pigmentation. How widespread is albinism? How does it affect an individual’s daily life? What can help those with albinism to live with their condition? *
While albinism is most perceptible among dark-skinned people, it is found among all nations, races, and peoples. It is estimated that albinism affects 1 out of every 20,000 persons.
The defective genes for albinism can be passed on for generations without any of its telltale signs being manifest. This was true in John’s case. None of his relatives can remember any of his ancestors having albinism.
Many attribute the word “albinism” to 17th-century Portuguese explorers. As they sailed along the West African coast, they sighted both black-skinned and white-skinned people. Assuming these represented two different races, they called the black Negroes and the white albinos—Portuguese for “black” and “white” respectively.
Effect on Skin and Eyes
For most light-skinned people, mild exposure to the sun results in a tan when a pigment called melanin is produced to protect the skin. John, however, has oculocutaneous albinism, one of the most common types. * Melanin is missing from his skin, hair, and eyes. How does this affect his skin? Without pigment, an albino’s skin is easily sunburned. Sunburn in itself is an unpleasant and painful condition. However, albinos who do not sufficiently protect their skin also risk developing skin cancer. This is especially so in tropical areas.
Thus, the first line of defense for an albino is to protect the skin with suitable clothing. John, for example, is a farmer. So when he works in the field, he wears a wide-brimmed straw hat and a long-sleeved shirt. Even though he has this protection, he explains: “At times I feel that my whole body is burning from within. When I return home and scratch my arm, skin sometimes peels right off under my fingernails.”
Another option is to wear sunscreen lotion if it is available. A lotion with a sun protection factor of at least 15 is best, and it should be liberally applied 30 minutes before sun exposure and every two hours thereafter.
Albinism can also affect the eyes in a variety of ways. Pigment in the iris normally screens sunlight from entering the eye, other than through the pupil. However, an albino’s iris is nearly translucent, which allows stray light to pass through it and cause irritation. To counter this, many wear a cap, a visor, or UV-protective sunglasses. Others opt for tinted contact lenses. John says that on many days he can get by without any protective eyewear. At night, however, he occasionally has discomfort from the glare of automobile headlights.
It is commonly thought that people with albinism have reddish eyes, but this is a misconception. Most albinos have irises tinted either dull gray, brown, or blue. So, then, why do they appear to have red eyes? Facts About Albinism says: “Under certain lighting conditions, there is a reddish or violet hue reflected through the iris, which has very little pigment. This reddish reflection comes from the retina.” This effect might be compared with red-eye, the reddish reflection in the eyes that sometimes appears in photographs taken with a flash.
Abnormalities of the eye are common among albinos. One condition is alteration of the nerves connecting the retina to the brain. The result can be that the eyes do not synchronize properly, causing reduced depth perception. This condition is called strabismus. Treatment may include use of eyeglasses or corrective surgery.
In many countries therapy is either not available or very expensive. How does John live with his strabismus? “I have to be careful,” he says. “When I want to cross a road, I use not only my eyes but also my ears. When I see a car, I know that it is not safe to cross if I can hear it coming.”
Nystagmus, an involuntary jittery movement of the eyes, can also result from albinism. This can lead to impaired vision, such as extreme nearsightedness or farsightedness. Glasses or contact lenses can sometimes help the impaired vision, but they do not correct the underlying problem. Some have learned to reduce nystagmus while reading by placing a finger by the eye or by tilting the head.
John’s most difficult handicap is, not strabismus or nystagmus, but extreme nearsightedness. “I have to position written material extremely close to my eyes to read,” says John, who is one of Jehovah’s Witnesses. “However, once I have acquired the right distance, I can actually read quite fast. This is important for my daily Bible reading.” He adds: “When I give talks at our Christian meetings, I prepare well so as not to be too dependent on my notes. I am very happy that the large-print edition of The Watchtower also appears in my language, Yoruba.”
For a child with ocular albinism, going to school can be a test. Parents who take the initiative and consult the teacher or school authorities in advance can often find practical aids. In some schools, for instance, high-contrast written material, large-type textbooks, and audio tapes are available. With good cooperation among parents, teachers, and school directors, a child with ocular albinism can make a success of his school years.
Most people with albinism learn how to live with their physical limitations. Many, however, find it difficult to endure the social stigmatization that comes with the condition. This can be especially challenging for children.
In some parts of West Africa, children with albinism are jeered or mocked with racist expressions. In some Yoruba-speaking areas, they are called “Afin,” meaning “horrible.” Usually, adults are not ridiculed as frequently as children. Although life in West Africa is generally spent outdoors, some albinos choose to remain indoors. This can easily lead to feelings of rejection and uselessness. That is how John felt until he learned the truth of God’s Word. Following his baptism in 1974, his whole outlook on life changed. John had been isolating himself at home, but he realized that he had a responsibility to go out and preach to others about the wonderful hope that he had acquired. He says, “Their spiritual situation is much more serious than my physical condition.” Does anyone make fun of him in the ministry? “Once in a while someone who is adamantly opposed to the Bible’s message will use my appearance as a reason to poke fun at me,” explains John. “This does not bother me because I realize that it is the message and not me that is the cause.”
The End of Albinism
In recent years much has changed in the treatment of albinism. Medical science is able to provide more assistance than ever before. Self-help groups offer a forum for exchanging experiences and improving understanding of the condition. The ultimate solution, however, rests not with man but with God.
Albinism, like all other maladies, is a consequence of the imperfection that all humans have inherited from the first man, Adam. (Genesis 3:17-19; Romans 5:12) By means of the ransom sacrifice of Jesus Christ, Jehovah will soon provide perfect health for all those displaying faith. Yes, he is the One “who is healing all your maladies.” (Psalm 103:3) Then, albinism will be a thing of the past, for everybody who suffers from it will experience the fulfillment of Job 33:25: “Let his flesh become fresher than in youth; let him return to the days of his youthful vigor.”
^ par. 8 See the accompanying box for a description of some types of albinism.
[Blurb on page 29]
“Their spiritual situation is much more serious than my physical condition.”—John
[Box on page 28]
SOME TYPES OF ALBINISM
The main categories of albinism include the following:
Oculocutaneous albinism. The pigment melanin is missing from the skin, the hair, and the eyes. There are about 20 variants of this type.
Ocular albinism. Its effects are limited to the eyes. The skin and the hair usually appear normal.
There are many other forms of albinism that are less well-known. For instance, one type is associated with Hermansky-Pudlak syndrome (HPS). Those with HPS have a tendency to bruise or bleed easily. There is a high concentration of this type of albinism in the Puerto Rican population, where the frequency is estimated to be 1 in 1,800 of the population.