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.
Albinism is a hereditary condition in which the body does not produce enough of the pigment melanin.
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.
In the first few months, as your child becomes aware of
their surroundings, look for back-and-forth eye 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.
The ophthalmologist will examine the child’s eyes and look
for things like translumination 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.
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.
There are a number of 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. Parents will just need to take precautions
that other parents really should take with their children anyway.
NOAH – The National Organization for Albinism and
Hypopigmentation
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