Albinism Awareness

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Fairfax Neonatal Associates

By Dr. Jennifer Alexander

This past year has filled social media not only with the challenges of COVID-19 but also with difficult conversations regarding the lived experiences of people of color in this country. I’m an African American female physician who has had to navigate challenging circumstances with respect to gender and color throughout my life.

Recently life has offered a twist on this topic for my family and me. Recently, on Albinism Awareness Day (June 13), I took time to reflect on having a son with albinism, the things my family and I have learned, and what is to come in the future.

As I breathed a sigh of relief that my second baby was just born, feeling both grateful and filled with joy, I couldn’t help but wonder why this precious little baby laying on my chest had blonde hair. Many thoughts entered my mind. “This is my baby, right?… He hasn’t left the room since birth, so he must be mine… Actually, he does have our features… Maybe his hair color is blonde now but will change as he grows older.”

I have seen many interesting presentations in the world of neonatology, but I couldn’t quite answer this one. During his first month of life, when neither his hair color nor light skin was demonstrating increased pigmentation, I figured it was time to ask questions about albinism.

Albinism is a rare group of genetic disorders that cause decreased pigment production in the body. It can occur in any ethnicity and is highest in people of sub-Saharan African descent (1 in 3,000). In the United States, approximately 1 in 18,000-20,000 people have albinism. Melanin is a chemical that is responsible for our eye, skin, and hair color.

Melanin also plays a role in optic nerve development. Therefore people with albinism have varying degrees of vision challenges. Both hair and skin color can range from very pale/white to brown.

For some people, color never changes, but in others, melanin production may begin to increase during childhood and the teen years, resulting in slight changes in pigmentation. Eye color can range from light blue to hazel to brown. The iris of the eye lacks pigment and thus cannot completely block light from entering the eye. Those with very light-colored eyes can appear red in some lighting, but it is a myth that the eye color itself is red.

Vision impairment is a key feature of albinism and may include one or more of the following:

The horizontal, involuntary back-and-forth movement of the eyes.

A muscle imbalance that leads to the inability of both eyes to stay directed at the same point or move in unison.

Sensitivity to light.

Abnormal curvature of the front surface of the eye or the lens inside the eye, resulting in blurred vision.

In an attempt to reduce the involuntary eye movements and better focus.

Including abnormal development of the retina and poor depth perception.

Albinism can include skin and eye complications as well as social and emotional challenges. The eye complications can impact visual learning and the ability to drive. Glasses are often needed.

Skin is very sensitive to light and sun exposure. Sunburn is very common, and the risk of skin cancer is higher. Strict sun protection is required, including sunscreen, hats, sunglasses, and sun-protective clothing.

Some people with albinism may experience discrimination given the conspicuous nature of their features and the stigmas placed on people with albinism in many cultures. They may experience bullying, teasing and become uncomfortable having to answer repeated questions about their color and eyewear. Looking different from others of their race, and especially their family, can lead to depression and poor self-esteem.

In other parts of the world, sadly, there exist irrational myths about people with albinism that can lead to them being victims of violence. Maintaining mental health is an important part of health maintenance in people with albinism.

My son is such a happy toddler; he not only fits in just right with our family but essentially runs the house. He is accustomed to and accepting of wearing glasses and sunscreen, but we are working on his willingness to keep on his hat outside. My hope is that through constant love and celebrating people of all colors and backgrounds that he remains as healthy as can be in all aspects.

The neonatologists, pediatric hospitalists, and nurse practitioners of Fairfax Neonatal Associates work at Inova L. J. Murphy Children’s Hospital, Inova Fair Oaks Hospital, and Inova Loudoun Hospital as an independent medical group devoted exclusively to provide the best possible care for critically ill newborns in the Neonatal Intensive Care Unit (NICU) and needed support to their parents and families.

The Neonatologists and pediatric subspecialists of Fairfax Neonatal Associates are also a part of the continuum of care at the Inova L. J. Murphy Children’s Hospital Fetal Care Center, where women who are at risk or suspected of carrying a baby with a fetal concern have access to maternal and pediatric specialists and surgeons conveniently on one medical campus. Learn more here.

Learn more about Dr. Jennifer Alexander, this post’s author here, and all of Fairfax Neonatal Associates’ providers here.

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