Dr. Monica Chahar, Chief Dermatologist & Director- Skin Décor, New Delhi

 Albinism is a rare genetic disorder that affects people worldwide. The condition occurs when the body fails to produce or distribute melanin, the pigment responsible for coloring the skin, hair, and eyes. It is typically inherited when both parents carry the albinism gene. People with albinism often have pale skin, hair, and eye color and they may experience various physical and visual impairments.

International Albinism Awareness Day observed on June 13th each year aims to shed light on this rare condition and promote understanding and inclusivity. Here, we will understand the key aspects of albinism, the challenges faced by individuals with this condition, and the need to raise awareness about the rare condition.

Albinism’s wider impact

The very rare disorder estimated to affect 1 in 20,000 every year people is of different types including Oculocutaneous Albinism (OCA) and Ocular Albinism (OA). OCA is the most common form, affecting the pigmentation of the eyes, hair, and skin. OA primarily affects the eyes, causing significant visual impairments.

Individuals with albinism often experience various visual impairments, such as reduced visual acuity, nystagmus (involuntary eye movements), strabismus (crossed or misaligned eyes), and sensitivity to light (photophobia). These challenges can significantly impact their daily lives, making it harder to perform tasks that require clear vision. Sun sensitivity is another key concern for individuals with albinism. The absence of melanin increases their susceptibility to sunburns and skin damage from ultraviolet (UV) radiation. Therefore, it is crucial for them to take measures to protect their skin and eyes by using sunscreen, wearing protective clothing, and using sunglasses and hats when outdoors.

In addition to the physical and visual impairments, people with albinism often face social and psychological challenges. Due to their unique appearance, they may encounter discrimination, prejudice, and stigmatization. These factors can lead to low self-esteem, social exclusion, and limited educational and employment opportunities.

While there is currently no cure for albinism, various visual aids, and support can help individuals manage their visual impairments. Prescription glasses or contact lenses can correct refractive errors, while low vision aids, such as magnifiers and specialized software, can assist with reading and other visual tasks. Regular skin examinations and early interventions are essential to address any potential conditions and provide appropriate support.

Why is it important to create Awareness?

International Albinism Awareness Day plays a crucial role in promoting understanding, acceptance, and inclusion for individuals with albinism. It aims to dispel myths and stereotypes surrounding albinism and raise awareness about the challenges they face. Various organizations and communities worldwide work together to advocate for the rights and well-being of people with albinism.

In conclusion, International Albinism Awareness Day plays a vital role in educating society about albinism, highlighting its challenges, and emphasizing the significance of inclusion and acceptance. By raising awareness and promoting understanding, we can create a more inclusive world where individuals with albinism can flourish and be recognized for their exceptional abilities and contributions.

Together, we can break down barriers and build a society that celebrates diversity and respects the rights and dignity of every individual, regardless of their appearance or genetic condition.