Albinism is a hereditary condition in which the body does not produce enough of the pigment, melanin. There are several degrees of albinism. One type affects the skin, hair, and eyes. Others may not affect all three. For parents who are unsure of what to look for, here are some helpful pointers.
Look for common signs of albinism. When babies are first born, it is difficult if not impossible, to immediately diagnose albinism when one or both parents have a light skin color. It is easier to diagnose in ethnic backgrounds where both parents have normally darker skin. Albinism is a static condition, so it is not crucial to diagnose it early. If a child has albinism, they will always have it, but the condition will not worsen over time. If a baby with albinism has a head full of hair when they are born, many people will quickly notice how light and how beautiful that hair is. In extreme cases, the child's eyes may appear to be pink, but normally, they will be blue or brown.
Watch for rapid back-and-forth eye movement. In the first few months, as your child becomes aware of their surroundings, look for rapid back-and-forth movement of their eyes when they attempt to focus on objects. If you do notice this, the condition is known as nystagmus and it is one indicator of albinism. Also, you may notice that your child tilts their head to the side and looks at things from the corner of their eyes. Talk to your child's pediatrician if you notice these things. They may refer you to a pediatric ophthalmologist for further testing.
Schedule an appointment with a pediatric ophthalmologist. The ophthalmologist will examine the child's eyes and look for things like transillumination of the iris, decreased visual acuity, or sensitivity to light. The true test that will determine the child's vision cannot be done until they are old enough to read an eye chart, but there are tests that may be done when they are very young to find a close estimate. One test uses white rectangular boards with printed lines on one end. The doctor will test the child to see if they notice the lines when the board is suddenly presented.
Have a genetic test done. If each doctor gives a diagnosis of albinism, you can have genetic testing done to confirm their findings. The results of the genetic test will help you to know the best way to care for your child and any precautions that should be taken. If the skin, eyes, and hair are all affected, the child will need very good protection from the sun at all times and limited exposure. Children whose skin is not affected may still have problems with their vision. Reducing glare in the rooms in your home and also in classrooms when they start school will help them to remain comfortable.
Contact organizations who support individuals with albinism and also parents of children with albinism. Do some research and you will find assistance in many areas. The most important thing to do is to treat your child just like any other child because they are just like any other child. Having albinism should not prohibit them from enjoying the same things as everyone else.
NOAH - The National Organization for Albinism and Hypopigmentation
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