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Today, June 13th is celebrated annually as World Albinism Day.
If your child has Albinism, do not be afraid. If the right steps are taken, your child would grow up just like every other child.
Growing up, your child would be faced with just three major problems. Sensitivity of his eyes to bright light, sensitivity of his skin to the sun and ridicule from others. Here are 6 steps to take to help your child cope with albinism;
1. Understanding Albinism
First off, you need to know and understand what albinism is. Albinism is a group of inherited conditions that cause insufficient production of melanin (dark pigment) in the hair, skin, and eyes. The lack of melanin in the body causes increased vulnerability towards damage of the sunlight. While ocular albinism only affects the eyes, oculocutaneous albinism affects the skin, hair and the eyes. However, other than coping with vision and skin problems, albinos also face social and emotional perils.
You also need to understand that your child is a blessing. Your child is not sick and cannot make others sick. It is safe and good to touch your child and to be near him. So hug him and hold him on your lap. If your child is an infant, it is safe and good to breastfeed him.
Your child is not a curse from any spirit or gods. Having an albino child does not mean bad things will happen to your family. Whenever there are problems, it is not the child who is causing the problem. Albinism is not caused by the unfaithfulness of either the wife or the husband. You should not suspect your spouse of being unfaithful. It is simply a specific combination of genetic traits passed on by both parents.
2. Speaking to your child about it
It is highly advised that you talk to your child about her condition and help her or him understand and know what is going to happen. Most importantly, make your child understand that you are always going to be there. Reassure her that he or she will grow up into an adult like other children and become a competent adult.
3. Speaking to the teachers
1. Seating positions: Ask the teacher to let your child experiment and seat where she can see the black or white board best. Try to position him\her away from the windows to avoid sunlight or any bright lights.
2. Higher contrasts: For many children with albinism, increasing the contrast in print is even more effective than increasing the size. Black on white is usually the most useful. Ask your child’s teacher to use high-contrast written materials. A plain blackboard is better than a green one and often, contrast can be greatly increased by frequently washing the board with plain water.
3. Extra-copies of notes: Ask the teacher to make copies of all board notes so that she can read up close while the rest of the class read from the blackboard. Also, request copies of overheads that are used in the lessons (most albino children cannot read due to the bright light that is deflected).
4. Visual Aids
Low vision tools such as telescopic lenses mounted on eyeglasses, hand-held monoculars and video-enlargement machines can help make reading easier for your child. Work with low vision specialists and opticians to find out what works best for your child.
5. Protection from the sun
You can do several things to help protect your skin from the sun. First, try to avoid having your child out in the sun from about 10 a.m. to about 4 p.m. At this time of day, the sun’s rays are the hottest and most direct and can hurt your child the most. During this time your child should stay inside or stay in the shade as much as possible. Outside chores should be done in the early morning or in the late afternoon when the sun’s rays are not so damaging.
Your child’s skin can also be protected by having him wear long-sleeved clothing. White or light-colored cotton shirts and long pants or a long skirt will protect your child’s skin and reflect the sun away from him. He should keep his shirt buttoned up and can wear a wide-brimmed hat to shade and protect his face, eyes, and ears. He can also wear sunblock lotion to protect the skin. This is very important for the skin areas that will not be covered by clothing. Be sure your child applies it to the outside part of his ears and his nose. He should not put this lotion in his eyes.
Coconut oil will not block the sun, but it is good for your child’s skin and can help protect him from some of the damage the sun might do. It acts like a mild medicine to help undo some of the damage the sun’s rays do to your child’s skin. You could rub coconut oil on your child’s skin at night or on rainy days when he is staying inside.
Ask your child’s teacher to excuse him from physical education class, which is usually held in the hot, sunny part of the day, wearing clothing that massively exposes your child’s skin to the dangers of the sun. Your child can do active things inside or in the shade in place of this class.
6. Defense and support
Others who do not understand albinism may ridicule you or your child. They may say unkind, hurtful things. They may even believe those things are true. You need to defend and support your child. If others ridicule him, you stick up for him. A child is too young and weak to face the ridicule of others all by himself. Ridicule can do permanent, serious damage to a child’s understanding of himself. It can prevent your child from reaching his full potential as a human being.
Many people with albinism are very intelligent or smart. They can learn just like others. They can go to school and they can do well in their studies.
Albinos have grown up to do outstanding things. Some well-known singers, government people, college teachers, and business people are albinos. Your child can do most of the things that other people can do. Your child can make a good living and make a positive contribution to the world. Because your child’s skin is sensitive, indoor jobs will be best for him. Working in a garden in the sun will be hard for him, but there are many jobs he can do—in schools, in stores, in businesses, in government, in entertainment, in religion, and in many other areas.