June 13: International Albinism Awareness Day

Every year on June 13, the world observes International Albinism Awareness Day, dedicated to honoring people with albinism worldwide who face numerous challenges such as discrimination, marginalization, bullying, violence, and even ritual killings in some regions. This day also commemorates those who have lost their lives due to these violations and celebrates survivors who courageously share their stories to raise awareness and educate others.

In this report, Dr. Issam Al-Ghazawi, Professor of Dermatology, explains how mothers can care for a child with albinism, describes the symptoms, and clarifies the difference between albinism and vitiligo.

History and Goals of International Albinism Awareness Day

The United Nations General Assembly adopted a global resolution on December 18, 2014, to establish this awareness day starting June 13, 2015. The UN organized a ceremony with representatives from many countries and prominent figures to promote awareness.

Goals include:

Increasing awareness about albinism as a genetic condition.
Highlighting the rights of people with albinism.
Combating discrimination and violence against them.
Clarifying achievements and challenges faced by people with albinism.
Educating communities on how to interact with and support those affected.
Sharing information about skin cancer risks and prevention.
Celebrating progress in skin cancer treatment and prevention.
Calling for further actions such as awareness campaigns, workshops, seminars, and sharing success stories of individuals with albinism to inspire and motivate others.

What Is Albinism?

Albinism is a genetic disorder caused by recessive genes, often more common in consanguineous marriages, with a 1 in 4 chance of inheritance. It affects people of all ages, characterized by very light skin, hair, and eyes — often called "enemies of the sun." It is a lifelong condition without a cure, focusing treatment on preserving vision and improving appearance.

People who carry the gene do not show symptoms. Both males and females are equally affected, but visual albinism is more common in males. Symptoms include involuntary eye movements (nystagmus), strabismus (crossed eyes), facial turning, and poor vision that glasses cannot fully correct.

Symptoms include:

Very light skin, hair, and eyes.
Patches of lost skin pigmentation.
Eye movement disorders and strabismus.
Vision problems and light sensitivity.
Refractive errors like nearsightedness, farsightedness, and astigmatism.
Retinal and optic nerve disorders.
Iris abnormalities.

Care Tips for Mothers with a Child Who Has Albinism

Avoid direct sun exposure, especially from 10 AM to 4 PM, due to heightened skin sensitivity.
Use protective clothing (long sleeves, pants, wide-brim hats) and apply sunscreen regularly.
Schedule regular eye exams at least once a year to monitor vision and get necessary corrective lenses.
Use UV-protection sunglasses to shield eyes from bright light.
Educate the child about their condition and the importance of sun protection.
Provide psychological support to help the child cope with social challenges and negative comments.
Conduct regular skin checks to detect any signs of skin cancer early, and report changes like new moles or changes in existing ones.
Maintain regular medical follow-ups, as children with albinism may have additional health issues like immune weakness or vision problems.

Difference Between Albinism and Vitiligo

Albinism is a hereditary genetic disorder characterized by a lack or absence of melanin pigment in the skin, hair, and eyes from birth. It affects all races, is not contagious, and is caused by genetic mutations affecting melanin production. It results in light skin, hair, and eyes, and sensitivity to light.
Vitiligo is an autoimmune disease where the immune system attacks pigment-producing cells (melanocytes), causing white patches to develop on the skin later in life (usually during adolescence or adulthood). It may cause itching or pain and commonly appears on hands, face, and feet.