FAQs

Simply put, albinism is a decrease in or absence of melanin, the protein necessary for pigmentation. This typically affects the skin, hair and eyes.

Melanin is a natural substance that gives color to hair, skin and iris of the eye.

Yes, Albinism affects people from all races.

Children constitute about 40% of this population spread across all the States in Nigeria.

No, it is mostly a recessive inherited condition.

Some of the common symptoms of Albinism are: 1. Absence of pigment from the hair, skin, or iris of the eyes 2. Low vision 3. Partly or absence of pigment 4. Lighter than normal skin and hair.

Most people with albinism are fair in complexion, but their skin or hair colour is not diagnostic of albinism. There are therefore two main types of albinism:
Type 1: Oculocutaneous (Prono unced ock-you-lowkew- Tain-ee-uc) albinism (OCA), pigment is lacking in the eyes, skin and hair. This type of albinism is more prevalent.
Type 2: Ocular Albinism (OA) which is much less common, involves lack of pigment only in the eyes. People who have ocular albinism have generally normal skin and hair colour; many even have normal eye appearance.

There are a number of issues and challenges that hinder and affect the total well-being of an Albino. These include: Vision, Skin Problems, Lack of Self-esteem, Myths about Albinism, Stigmatization, Stereotype and their effects on Learning.

No, their vision may vary from 20/40 to 20/400. Persons with Albinism may be “legally blind” which is defined as vision that is not correctable to better than 20/200. However, this is quite different from total blindness.

Yes, but with minor modifications and minimal assistance, students can be successful. The social side of education can potentially be the most difficult however, due to name calling, bullying, etc

It is to protect them from Ultra Violet rays.

Yes, they can, if they have large prints.

Yes, the Ultra Violet rays from the sun hurt their eyes by destroying the iris and retina.

So that they can see very well as they have eye impairment.

The one that has a UVB filtered 50+

No, she can’t see clearly things that are far away or some distance away.

Yes, it is unlikely to get any better, but like everybody’s eyesight it may get worse as they get older.

They wobble because of a condition called Nystagmus.

Their heads wobble just very slightly sometimes to counteract their Nystagmus, to sometime automatically improve their vision.

You should see an ophthalmologist and a dermatologist.

Usually there are no developmental problems associated with ocular albinism but in rare occasions when there is a chromosomal deletion within the gene , it can result in deafness, developmental retardation, and mildly shortened stature.

Albinism does not usually affect the lifespan. However, the lifespan can b e shortened in the Hermansky -Pudlak syndrome due to lung disease or bleeding problems. Persons with Albinism may have to limit their activities because they cannot tolerate sun exposure.

Persons with Albinism have a poorly developed fovea. In normal-sighted people, the fovea is in the center of the macula and an image will land there when the person is looking straight ahead. Their fovea is where they focus for their best detail vision – such as seeing a freckle on a person’s face. Because a person with albinism has an underdeveloped fovea, they must find their best area of focus, which may be anywhere on their retina. Typically, they will move their head to the position necessary to focus on this spot, consequently slowing their Nystagmus, and allowing for their best vision. This is their null point.

This is a complex question because it affects the eyes in several ways:

1. In a normal -sighted eye, the optic nerve (which connects the eyeball to the brain) includes some fibers that stay on one side of the brain and some that cross over to the other. Melanin provides the signal that indicates which fibers should cross over and which should not. In albinism, the lack of melanin results in an improper crossing which leads to poor depth perception.

2. The retina (the back of the eyeball) is made up of several cell layers. One of them, known as the retinal pigment epithelium, converts incoming images into a signal which is routed to the brain. People with albinism are missing the melanin that should lie within the retinal pigment epithelium. Without it, this signal is not processed properly and vision is impaired.

3. Decreased pigment in the iris (the part of the eye with color) and the retina leads to a diminished ability to absorb light. As light reflects off normal blood vessels in the back of the eye and through the pale iris, the effect is the red color sometimes seen in people with albinism. Insufficient iris pigmentation also causes people with albinism to be more light -sensitive and experience discomfort in bright light.

No. OCA1a is the subtype typically associated with white hair, as people with this type have no pigment. Depending on the type of albinism and the race, Persons with Albinism can have white, blond or brown hair. People with ocular albinism (OA), a subtype affecting only the eyes, can have black hair.

No. Most people with albinism have blue, green, hazel or even brown eyes. The pink appearance is due to the reflection of the back of the eye through a pale iris.

Not necessarily. There are different types of albinism that affect several different genes. If two people with the same type of albinism reproduce, all of their children will have albinism. If two people with two different types of albinism have children, NONE of their children will have albinism. The genetics are complicated, but that’s how it works.

No. Albinism does not cause mental retardation. In fact, some experts consider Persons with Albinism to have higher IQs than their siblings.

Sometimes. The requirements vary by country and by state. Drivers may be required to use bioptics.

No, they are capable of reproduction.

No, it is hereditary.

No, there is no known association between albinism and hearing loss.

No, most children with albinism function well in a mainstream classroom, with proper accommodation.

Yes, depending on the degree of visual impairment, some accommodations may be necessary. These include large print books, a CCTV, magnifiers, audio books, high contrast materials and many up and coming technologies. Although Braille is typically not necessary for people with albinism, some may learn to use it in order to give their eyes a rest.

Yes, children with albinism have low vision and sun-sensitivity but are otherwise “normal” children.

No, this statement is spread by witch doctors in order to enrich themselves at the expense of others.

Albinism is a hereditary disorder and hence the following people are at a higher risk of developing the disease:

1. Children of parents who have albinism

2. Children of parents, who do not have albinism, but carry the altered genes that cause this disorder (carriers)

3. A positive family history for albinism.

Albinism can typically be diagnosed with a simple eye exam by an experienced ophthalmologist.

In the beginning, it may seem overwhelming. However, once a child reaches about three years of age, typically the only albinism-related doctor appointments necessary (outside of a yearly physical) are with an ophthalmologist every 6 months to 1 year and a dermatologist once a year.

Absolutely, with proper sunscreen and sunglasses, they can go anywhere.

Unfortunately, albinism is a poorly understood condition. The idea of “the evil albino,” while ridiculous, has been perpetuated by books, movies and the general media. (Please see www.lunaeterna.net/popcult for examples.) The truth is, of course, that Persons with Albinism are regular people who happen to have a decreased amount of pigment in their hair, skin and eyes.

You can contact The Albino Foundations (TAF) on:

Website; www.albinofoundation.org

E-mail: albinofoundation@aof.doc

Albinism can be efficiently managed.

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