Brotherly Love: Albinism by Patricia Williams
Updated: a day ago
Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes. Typically those with albinism have white hair, very fair skin and some form of vision impairment. Albinism occurs in all racial and ethnic groups throughout the world, approximately affecting one in 18,000 people. A common myth is that people with albinism have red eyes. Although most people with albinism have blue eyes, some lighting conditions allow the blood vessels at the back of the eye to be seen, which can cause the eyes to look reddish or violet.
We have 4 sons and two of them were born with albinism. When we first discovered our 2nd son had albinism, there were a couple of things we noticed as being very unique. First is the white hair, white eye- lashes and white eyebrows. His hair was so white that it would sparkle in the sunlight. Nurses who were not our nurses, were coming in to see the “baby with the white hair”. Second was the way his eyes were always tracking back and forth in constant motion. We later learned this is called nystagmus and is a very common trait in those with albinism. In the beginning I was so concerned and worried about how our sons would navigate through life’s challenges and how people would treat them. But watching our boys grow and learn with such determination and grit, has erased all my concerns. They both enjoy all the same things other children their age enjoy. They excel in school, they play games on their iPads, they ride bikes, they climb ladders at the playground and love playing tag and hide n seek. We also love swimming and going to the beach as a family... things I feared our boys would really struggle with. Adjusting to the needs of albinism has taken some time. We have a full stock of sunglasses, sunscreen and hats, and now prefer going to parks closer to sundown rather than in the middle of the day. Once we found our routine, it became a very normal part of our life. Adjusting to the reactions of others and their comments is still a work in progress and most likely will continue to be throughout our lives. As parents, we strive to be good examples to our children on how to spread awareness about albinism in a positive light and not to be embarrassed or ashamed to discuss it. By keeping a positive, open dialect we believe this is significant in helping them understand how to be vocal and advocate their needs while navigating not only through school, but also through life. I’ve always said the best defense we can give to our boys is to teach them how to be confident and give them the right things to say when they may overhear people being unkind. My husband has always said, “The next best defense is to give them Kung-Fu lessons.”