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Many People Comment on My Child With Albinism, but This One Stood Out

Mother laying next to her baby.

When my daughter, Scotlyn, was born, she had high levels of jaundice, so they sent us home and told us to place her either in the sun or in front of windows in the sun. Five months later with a diagnosis of albinism under our belts, we now have strict instructions to keep her out of the sun. In fact, she has a whole wardrobe quickly filling up with full-body UV swimsuits, hats, sunglasses and soon a daily dose of head-to-toe sunscreen. I imagine we’ll get so good at spooning out tablespoons of Banana Boat, and lathering it between each finger and in the crooks of her ears, that it will turn into a ritual like brushing our teeth.

So earlier this week when a lady at the drug store told me my baby was the whitest baby she has ever seen, but will probably be the first teenager out suntanning, I just smile. It doesn’t end there, of course. She continues on about teenagers and tanning, and as I walk away, she turns to her friend to share whispers and stares at my fair-haired baby.

This scenario happens almost every time I am out with Scotlyn, but it’s a different store and a different woman. Their comments make me uncomfortable because they bring with them a fear that my daughter will have to grow up hearing how white her skin and hair is over and over again. I try not to let my mind play out these situations, which may or may never happen, but I can’t help it. Maybe she’s on the playground and a little boy wants to know why on the hottest day of the summer she’s wearing a long-sleeved shirt and sneakers instead of sandals. Or maybe she’s 16 and a girl in her class wants to know what she does to get her hair that white.

Scotlyn’s less than a year old now, but she might grow up to have low vision and may not always be able to perfectly see you, as is the case with most people with albinism. But she will always hear you, so I’d like to tell this lady, the future little boy at the playground or girls in her class to please choose their comments carefully.

Later, I returned to the same drug store with a sense of dread and was met with more comments. But this time as I left the store, it was the unmistakable tone of an older gentlemen. “Hey, miss!” he shouted. When I turned, I recognized him from the card aisle where I was trying to balance a basketful of baby items in one hand and Scotlyn in the other. I had to stop and put everything down, so I could hold her by both arms and let her bounce, her new favorite pastime. He continued talking as I strapped Scottie into her car seat. I half ignored him while I tried to get her out of the sun.

“It’s so nice to see the love you have for your daughter,” he told me. “I can tell you’re a good mom, so good job. They don’t stay that age for long, and I miss mine.” His comment took me off guard because it wasn’t what I was expecting to hear. On this day, we were just like any other mother and daughter out buying diaper cream. We left the store without remarks of whiteness, only a lasting impression of love.

To that gentleman at the drug store: thank you for seeing beyond the white hair and into our hearts.

source;http://themighty.com

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10 Dangerous Myths About Albinism, and the Truths Behind Them

Albinism is one of the least understood conditions around the world, and it doesn’t help that popular culture persists in perpetuating many myths. Myths that are simply false. These myths have existed throughout history and continue to negatively affect the lives of many people with albinism (PWA), even to this day. In some cases, these myths are actually endangering lives, particularly in parts of Africa whereritualized violence against PWA is on the rise. Here are 10 of the most common myths surrounding albinism, and the truths behind them: 1. Albinism is contagious. Albinism is a genetic condition passed on by both parents. Each parent must be a carrier, and both must pass on an albinism gene for someone to be born with the condition. It cannot be caught and is not contagious. 2. Albinism is a curse or a punishment. Albinism is a genetic condition that results in a lack or total absence of melanin (pigmentation) in the body. It is not a curse or a punishment for past wrongs. It is purely an autosomal-recessive genetic condition thataffects around 1 in 20,000 people in North America and Europe. 3. PWA are less intelligent. Albinism does not have an impact on a person’s intelligence. Albinism merely affects the level of melanin in the body. It has nothing to do with the brain, and most people with albinism have average levels of intelligence. However, due to the lack of melanin present in the development of the eyes, most people with albinism suffer from significant vision impairment which can affect learning and education outcomes. 4. PWA have red eyes. PWA actually have eyes that range from blue through to brown. However, the lack of melanin that characterizes the condition means light is not absorbed by the eyes and is instead reflected back out, which sometimes leads to a reddish glow in certain lighting conditions. 5. PWA all have white skin and hair. Not all PWA are entirely white. PWA from an African background can instead have yellow or orange hair and can also have some level of skin pigmentation. There are many types of albinism too, some of which are characterized by reduced melanin, rather than a complete lack of it. In these cases, PWA will appear to have some pigmentation and will therefore not have the stereotypical white skin and hair. 6. PWA are evil. This is a myth perpetuated by society and reinforced by Hollywood. Albinism is, for some, a confronting condition. Anything to do with visible difference is invariably met with distrust. Throughout history, most PWA have been stigmatized, demonized and ostracized, all because of how they look. Apart from lacking pigmentation and having a vision impairment, PWA are exactly the same as everyone else. And just like everyone else, they are not born inherently evil. 7. PWA can cure HIV and their body parts possess magical properties. In 2000-2013 the UN Human Rights Office received more than 200 reports of killings and dismembering of people with albinism for ritual purposes in 15 countries. It is also commonly believed in parts of Africa that having sex with someone with albinism can cure HIV. This is not true and has led to violent rapes and rising HIV infection rates in the albinism community. PWA do not possess magical properties nor the power to cure disease. 8. Albinism only affects appearance. Melanin is integral to developing skin, hair and eye color, however it is also vital for the development of healthy vision. PWA often suffer from significant vision loss due to the lack of melanin present during the development of the eyes in the womb. Together with reduced visual acuity, albinism is also characterized by rapid, involuntary movement of the eyes (nystagmus), difficulty dealing with glare (photophobia) and problems with distance vision and depth perception. 9. PWA cannot go outside during the day. PWA can go outside at any time but need to take extra precautions when out in the sun. Protective clothing, sunscreen and a hat are required all year round to minimize the risk of skin damage from the sun. 10. PWA are the result of the mixture of two races. PWA are the result of genetics, pure and simple. The rates of albinism in Africa, in particular, are higher than elsewhere partly due to a long held culture of intermarriage. So the greater prevalence of albinism is due to a limited gene pool; it’s not the result of the mixture of two races. It seems to be a sad fact of life that those who look different will always be treated differently. The history of albinism and of PWA, even now, confirms this. Hopefully learning a little more about the condition will help people better understand it and hopefully lead to greater acceptance by society. source;http://themighty.com