Loving the skin I’m in: Living with Albinism

(Left) Senior criminal justice major Ga’Kia Baker was born with a unique condition called albinism. (Right) & Sophomore music performance major Angel Wallace has directly felt the physical effects of albinism.
Photo Submitted by Ga'Kia Baker and Angel Miller. 

From the moment senior criminal justice major Ga’Kia Baker stepped on Florida A&M University’s campus, she knew she would stand out. The Perry-native was born with a unique condition called albinism. Knowing the rarity of the condition and questions she may encounter, Baker chose to walk with her head held high everywhere she went.

“I became aware of my albinism at the age of three or four. Even though my mom explained to me what it was, I didn’t know I was different until I began school,” Baker said. “With my family being so supportive and used to it, I just never saw an issue.”

Albinism is a rare group of inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and or eyes. It occurs in all racial and ethnic groups. According to the National Organization for Albinism and Hypopigmentation, in the U.S., approximately one in 18,000 to 20,000 people has some type of albinism.

With the many social stigmas of the condition, many individuals either become secluded or interactive with the world around them. Baker chose to accept her albinism for all that it is, embracing the “good” and the “bad.”

“I have an infatuation with my skin. I love it so much because I always stand out, even though I don’t want to,” Baker said. “It forces me to be comfortable wherever I am.”

As time changes, more people are becoming interested in learning about albinism. Baker recalled a time where a student on campus approached her to ask questions about her condition. 

“A guy from the band approached me and introduced himself. He said that he knew someone who also had albinism and wanted me to educate him in order to advocate and understand her,” Baker said. “That’s the attitude I believe everyone should have.”

People with albinism are known for having very light hair and skin but what many do not know is there are different types of this condition. Oculocutaneous Albinism is a reduction or lack of melanin pigment in the hair, skin and eyes. Ocular albinism reduces the pigmentation of the iris in the eye which is essential for normal vision. 

Mike McGowan, the executive director of National Organization for Albinism and Hypopigmentation (NOAH), wanted the public to be informed of the psychological and physical effects of albinism. He explained the condition and the stigmas about those with the condition.

“I would like the public to know that people with albinism have some degree of non-correctable low vision in addition to reduced or missing pigment in their skin, hair and eyes. The low vision associated with albinism presents real challenges for those with the condition,” McGowan said. “I would also like the public to know that many people with albinism face the stigma of difference. Albinism makes those who have it look noticeably different than their family.  Different appearances all too often lead to myths and stereotypes that are simply not true.”

Angel Wallace, sophomore music performance major, has directly felt the physical effects of albinism since even a little too much sun could hurt her. Though she does not define herself by her disability or condition, Wallace went on to explain some challenges she has faced.

“The sun is my enemy, we don’t go well together. Fifteen to thirty minutes in the sun without the proper protection and I’ll have close to a second degree burn,” Wallace said. “Another issue is low vision. Although it’s gotten better as I’ve gotten older, my vision is still not where I’d like it to be.”

Society’s outlook about albinism has an effect on how individuals who have this condition react to the world. It is important to set free of those stigmas that hinder the acceptance of albinism in society. Though currently there is no cure, with understanding and information the general public can be an ally for those living with albinism.