Let us talk about Albinism

Recently, I saw an AI video. In the movie, a woman called Ngozi was sent packing from her home because she had a baby with albinism.

The man got another wife, and this time, the new wife had twins with albinism! One of the babies’ albinism looked like vitiligo-like patches on the skin!

Despite all the explanations by the doctor on albinism, the mother-in-law insisted that the new wife cheated too.

It took the intervention of the oldest man in the family to set the record straight. In his words, “Blood does not forget, blood remembers everything. Everything you try to bury in your blood, it keeps safe, and it passes it quietly from hand to hand, generations to generations, until the day comes when it decides to show itself again.”

So, the truth was that the great-grandmother of this mother-in-law and two of her siblings lived with albinism. One of these siblings’ albinism was presented in the form of vitiligo-like patches on the skin.

Obviously, no one told the mother-in-law the family history because albinism was seen as a shameful thing. She became so sorry for how she treated the new wife. This turn of events vindicated the first wife.

On this note, let us get justice for all the Ngozis out there while we also educate ourselves about albinism.

The word “albino” comes from the Latin word “albus,” which means white.

Albinism is a genetic disorder where you are born with less melanin pigment than usual. Melanin is a chemical in your body that determines the colour of your skin, hair and eyes. It is also involved in optic nerve development, which means it helps your eyes function as they should.

Usually, both parents must carry the albinism gene to have a child with albinism.

The albinism gene is a recessive gene, meaning that a child has to receive a copy from both parents to have the disorder. If the child gets a copy of the gene from just one parent, he or she will not have symptoms of albinism, but if both parents carry the gene, there is a one-in-four chance with each pregnancy that the baby will be born with albinism.

Most people with albinism have very pale skin, hair and eyes. The exact skin tone, hair colour and eye colour can vary from person to person. Most people with this condition also have vision problems ranging from mild to severe.

There are two main types of albinism:

Oculocutaneous albinism

Oculocutaneous (pronounced “ock-you-low-kew-TAIN-ee-us”) albinism (OCA) is the most common type of albinism. People with this type have extremely pale hair, skin and eyes. They typically also have vision problems. There are seven forms of OCA, and each affects your body in a slightly different way. For example, your hair and skin may be lighter or darker depending on the specific form of OCA you have.

Oculocutaneous albinism follows an autosomal recessive pattern of inheritance. This means you must inherit an albinism gene from both of your biological parents to develop the condition yourself.

If just one of your parents has an albinism gene, you won’t be born with OCA. But you will have a 50 per cent chance of being a carrier of the gene.

If you are a carrier, that means you have one albinism gene but do not show any signs or symptoms of the condition. If you have a baby with a person who is also a carrier, your baby will have a 25 per cent chance of being born with OCA.

Ocular albinism

Ocular albinism (OA) is passed down through an X-linked recessive inheritance pattern, meaning the gene change responsible for the condition is carried on the X chromosome.

It is much less common than OCA. It mostly affects your eyes. It does not affect your skin or hair much, if at all.

OA usually leads to blurred vision, sensitivity to light and other symptoms that may affect how you see and interact with the world around you.

OA mostly occurs in males.

This pattern affects boys and girls differently: girls who get the albinism gene usually become carriers only, while boys who get it will have albinism.

When a mother is a carrier of an X-linked type of albinism, each of her daughters has a 1 in 2 chance of becoming a carrier. Each of her sons has a 1 in 2 chance of having albinism.

When a father has an X-linked type of albinism, his daughters will become carriers, and his sons will not have albinism and will not be carriers.

Albinism is sometimes a feature of a genetic syndrome. This means you have OCA or OA, as well as other medical conditions affecting different parts of your body. For example, albinism occurs as part of:

Hermansky-Pudlak syndrome

This is a genetic metabolic disorder. People with HPS have albinism, as well as blood disorders, bruising issues and lung, kidney or bowel diseases.

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Chediak-Higashi syndrome

This is a genetic immune disorder that makes you more vulnerable to infections. People with CHS also commonly have albinism and may bruise or bleed more easily than expected.

What are the symptoms of albinism?

People with albinism will have the following symptoms:

An absence of colour in the skin, hair or eyes.

Lighter-than-normal colouring of the skin, hair or eyes.

Patches of skin that have an absence of colour.

Albinism occurs with vision problems, which may include:

Strabismus, or crossed eyes.

Photophobia, or sensitivity to light.

Nystagmus, or involuntary rapid eye movements.

Impaired vision or blindness.

Astigmatism.

Management and treatment

When you have albinism, you are at a higher risk of developing sunburn and more serious conditions like skin cancer.

So, it is essential to limit sun exposure and check for signs of skin changes.

Here are some tips:

Spend time outdoors only when the sun is not as strong.

Wear sunglasses, hats and sun-protective clothing.

Apply sunscreen regularly.

Check your skin for any signs of changes.

Besides affecting your skin, albinism may also affect your vision. Eye care specialists, like ophthalmologists, can recommend appropriate treatment. This may involve:

Using low-vision aids, like magnifying lenses or telescopic lenses, to help you see things more clearly.

Getting prescription eyeglasses or contact lenses to help correct refractive errors (like nearsightedness or farsightedness).

Having surgery to correct crossed eyes (strabismus).

Often, some small tweaks, like changing where you sit in relation to a lamp or sunny window – can make a big difference.

A study titled Albinism: From Genetics to Cell Biology and Psychopathology by Modibo Diallo et al. concludes that albinism is a genetic condition caused by mutations in genes that encode proteins responsible for enabling pigmented cells to produce the pigment melanin.

Albinism is just an inherited genetic condition; it is not a curse. Let us stop all the stigma and discrimination against them.

Be kind to them. Do not refer to them as “albinos”; rather, call them “people living with albinism.”

This puts the person first rather than using a medical condition to define their identity.