What is Albinism?

Albinism is a genetic condition that affects the production of melanin, the pigment that gives colour to the skin, hair, and eyes. People with albinism have little or no melanin in their skin and hair, and often have very light-colored hair and skin. A lack of pigmentation in the eyes can lead to a range of vision problems.

People with albinism are at an increased risk of developing vision problems, such as nystagmus (involuntary eye movements), strabismus (crossed or misaligned eyes), and photophobia (sensitivity to light). They may also have reduced visual acuity and depth perception, and may be more susceptible to sunburn and skin cancer due to the lack of melanin in their skin.

The different types of albinism:

There are several types of albinism, including oculocutaneous albinism and ocular albinism. Oculocutaneous albinism affects the skin, hair, and eyes, while ocular albinism primarily affects the eyes.

Oculocutaneous Albinism

affects the skin, hair, and eyes

Ocular Albinism

primarily affects the eyes

Although there is no cure for albinism, people with the condition can manage their symptoms with visual aids such as glasses and contact lenses, and by taking precautions to protect their skin from the sun.

 

The eye problems caused by Albinism are static and do not get worse with age.

So, the vision a child born with Albinism has is normal for them.
They will develop great coping skills with the right help and support.  

Albinism Fellowship

Symptoms of Albinism

The symptoms of albinism can vary depending on the type and severity of the condition, but they often include:

Lack of pigmentation

People with albinism have little or no melanin in their skin, hair, and eyes. This can cause them to have very pale skin, white or blond hair, and light-colored eyes (usually blue or pink).

Vision problems

Albinism can affect the development and function of the eyes, leading to vision problems such as reduced visual acuity (sharpness), nystagmus (involuntary eye movements), strabismus (crossed or wandering eyes), and sensitivity to bright light.

Freckles and moles

 People with albinism may have a higher number of freckles and moles than those without the condition, as these are areas of the skin with some pigmentation.

Increased risk of skin cancer

Because people with albinism have very little melanin in their skin, they are at increased risk of developing skin cancer, especially if they spend a lot of time in the sun without protection.

How someone with Albinism might view the world  

Please note this is a simulation of albinism, based on the anecdotal experiences of people who have the condition.
This image is not the experience of everyone with albinism and is for illustration purposes only.

Diagnosis of Albinism

Diagnosing vision problems due to albinism typically involves a comprehensive eye exam by an ophthalmologist who has experience with the condition. The exam may include:

Visual Acuity Testing

This measures how well you can see at different distances using an eye chart.

Refraction Testing 

This measures the amount of shortsightedness (nearsightedness), longsightedness (farsightedness), or astigmatism you have.

Eye Movement Testing

This checks for nystagmus or strabismus, which are common in people with albinism.

Examination of the back of the eye

This checks for any abnormalities in the retina, which is responsible for transmitting visual information to the brain.

Electroretinography (ERG)

This is a test that measures the electrical activity of the retina in response to light, and can help determine how well the retina is functioning.

Genetic Testing

This can confirm a diagnosis of albinism and help determine the type and severity of the condition.

After the exam, your ophthalmologist can discuss your diagnosis and recommend appropriate treatment options. These may include corrective lenses, low vision aids, or other therapies to improve your vision. You may also receive guidance on how to protect your eyes and skin from damage, as well as ways to manage any social or psychological issues related to the condition.

In the US and UK, approximately one in 18,000 people has some type of albinism. In other parts of the world, the occurrence can be as high as one in 3,000. 

National Organization for Albinism and Hypopigmentation (NOAH) 

Treatment

There is no cure for albinism, and vision problems associated with the condition cannot be completely corrected. However, there are several treatments and interventions that can help improve vision and manage symptoms. These may include:

Corrective lenses

Prescription glasses or contact lenses can help improve visual acuity and reduce the impact of refractive errors such as nearsightedness or farsightedness.

Low vision aids

These are devices such as magnifying glasses or electronic magnifiers that can help people with low vision due to albinism see more clearly and perform daily tasks.

Vision therapy

This is a type of rehabilitation program that can help improve eye movements and coordination, as well as visual perception and processing.

Sun protection

People with albinism are at increased risk of developing skin cancer due to their lack of melanin, so it is important to protect the skin from sun damage by wearing protective clothing and sunscreen.

Counselling

Counselling and support groups can help people with albinism cope with social and psychological issues related to the condition, such as discrimination or low self-esteem.

Surgery

In some cases, surgery may be recommended to correct eye muscle imbalances or other structural abnormalities that can cause vision problems in people with albinism.

It's important to note that the treatment plan for each individual with albinism may vary depending on the severity and type of the condition, as well as the specific symptoms and needs of the patient. It's best to work with an experienced doctor who can provide tailored treatment recommendations based on your individual situation.

Albinism is an inherited genetic condition.

Most children with albinism are born to parents whose hair and eye color are typical for their ethnic backgrounds.

National Organization for Albinism and Hypopigmentation (NOAH) 

Living with Albinism

Living with vision problems due to albinism can be challenging, but with the right strategies and support, it is possible to lead a fulfilling life. Here are some tips for living with vision problems due to albinism:

Get regular eye exams

Albinism can cause a variety of vision problems, including nystagmus (involuntary eye movements), strabismus (crossed or misaligned eyes), and photophobia (sensitivity to light). Regular eye exams can help detect and monitor these issues and help you get the appropriate treatment.

Use assistive technology

Assistive technology, including screen magnifiers, screen readers and accessible book readers and text-to-speech software, can help you navigate your daily life. These tools can make it easier to read, write, and use technology. Whatever your experience is with computers, Dolphin assistive technology can help. 

Manage lighting

Bright lights and glare can be especially difficult for people with albinism. To manage lighting, consider using tinted glasses or window film to reduce glare. You may also find it helpful to use task lighting instead of overhead lighting.

Practice good eye care

Protecting your eyes from sun damage and other environmental factors can help preserve your vision. Wear sunglasses and a hat with a brim when outdoors, and use lubricating eye drops to keep your eyes moist.

Seek support

Living with albinism can be isolating, but connecting with others who have similar experiences can help. Joining a support group or online community can provide you with a sense of community and help you learn from others who have navigated similar challenges.