Albinism is a condition some people are born with, where their bodies make little or no melanin, the pigment that gives color to the skin, hair, and eyes. It happens because of changes in certain genes and is usually passed down from both parents through what’s called an autosomal recessive pattern, according to the Mayo Clinic. This means a child has to get the changed gene from both their mom and dad to have albinism. There are different types, with some affecting the skin, hair, and eyes.
According to the National Organization of Albinism and Hypopigmentation (NOAH), about one in every 18,000 to 20,000 people in the United States has some form of albinism, and it can affect people of any race. In some parts of the world—especially in regions like South Africa, Zimbabwe, Tanzania, and Nigeria—albinism is more common. Studies show that around 1 in 1,000 people in these areas may be born with the condition.
Discrimination, ignorance, and mistreatment can make living with albinism challenging for some.
People with albinism often experience symptoms that can make everyday life more challenging. These may include vision problems, sensitivity to bright light, and involuntary eye movements. Due to a lack of melanin, they are also more prone to sunburn and have a higher risk of developing skin cancer. Albinism is a genetic condition that can affect individuals of any race or background, and it is not contagious. Unfortunately, those with albinism—especially Black individuals—may encounter discrimination or mistreatment rooted in harmful myths and misinformation.
Natalie Devora, a Black writer from Oakland, California, said she struggled to fit in as a person navigating the complexities of her albinism throughout life.
“Everyone was brown, and then there was me,” Devora told NPR in 2015. “I’m a white-skinned black woman. That’s how I navigate through the world. That’s how I identify.”
Those feelings surfaced all throughout adulthood as she struggled to find a space where she belonged. While attending a writers of color meetup at a local bookstore in Oakland, Devora was confronted with her inner war on “colors” when an attendee made her feel unwelcomed, mentioning that the get-together was a “Black only space.”
“It touched on how my life had been a war of colors,” Devora explained. “Both a black woman and a black woman without pigment.” Devora isn’t alone.
In honor of International Albinism Awareness Day in June 2024, Black beauty and lifestyle YouTuber Iyana LeShea opened up about how she has had to learn to “love” herself and her beautiful “pure golden hair” as her albinism didn’t fit society’s expectations of beauty growing up in a Black community. Now, she’s on a mission to spread awareness about the issue.
The beauty guru uses her YouTube platform to celebrate the joy and uniqueness of living with albinism. Whether she’s showcasing her glowing face in the latest makeup trends or styling her gorgeous curls with popular Black-owned haircare products, she proudly proves that albinism is beautiful and that people with the condition are just as vibrant and confident as anyone else.
“My albinism has taught me to be confident, brave, and hold my head high,” LeShea shared in her video posted last year. “My albinism does not define who I am and what I can and can’t do. It’s something I’m blessed to have. It’s something that’s unique.”
Awareness is key.
Living with albinism can sometimes feel isolating, but many organizations are actively working to challenge harmful stigmas and raise awareness. One such group is NOAH, founded in 1982 in Philadelphia. The organization was created by and for individuals with albinism and has local chapters throughout the U.S. From annual conferences to monthly events, these gatherings offer a space where people with albinism can feel seen, heard, and connected, building meaningful relationships and a strong sense of community.
The Global Albinism Alliance is another key organization working to make a difference. It supports a wide range of albinism awareness groups worldwide, helping them become more effective and impactful in their mission to advocate for the condition. The Alliance also works to improve the global understanding of albinism and advocates for the rights and inclusion of people with the condition on an international scale.
A key part of their mission is to ensure that the voices of the albinism community are represented in global conversations. One example is the field of dermatology, where the Alliance has established strong partnerships with organizations like the International League of Dermatological Societies to advocate for better understanding, research, and support on albinism.
SEE ALSO:
The History Of Black People With Blonde Hair
The Origins Of Black People With Red Hair
Black People With Albinism: Challenging Beauty Norms & Stereotypes
was originally published on
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