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Newly Diagnosed

Albinism can be diagnosed by an experienced ophthalmologist or optometrist with a simple eye exam. There are confirmatory tests, such as genetic testing, but they are not yet perfected. For more information on genetic testing, contact a qualified genetic counselor. Genetic counselors are generally affiliated with universities and/or children’s hospitals. If a diagnosis is unclear, a special vision test, known as a  VEP (Visual Evoked Potential), can sometimes be used to rule out a diagnosis of albinism.

If you are reading this section of our website, you are most likely the parent of a child with albinism. Congratulations on the birth of your wonderful child! Although your journey as a parent will be different than what you expected, rest assured that your journey will be equally as joyful and wondrous.  Before you begin reading about what to expect, we hope you that you will find comfort in these words:  you are not alone.  There are many families dealing with albinism and multiple organizations that support albinism.

There are many different types of albinism, and depending on which type of albinism your child has, the diagnosis may have come at varying ages.  Regardless of when you found out, the first few days following the diagnosis are often the hardest.  You may be confused, sad, scared or even angry to find out that your child has a genetic condition.  Some people accept the diagnosis and immediately move along to find what to expect next.  Others experience the classic stages of grief.  Whatever your response to the diagnosis, please know that there is no ‘right way’ to react and you should not feel guilty about being sad or angry.  Be kind to yourself as you work your way through your emotions.  Also, know that many times one parent reacts differently than the other.  Try to be patient with one another.

As you read through this website, we hope you see your child as your child first and not see ‘albinism’ first.  Your child is the same child you fell in love with.  Your dreams are the same.  The journey to reach those dreams may just be a little different than you expected.

So, where do you go from here?  Broadly speaking, there are a few things you can do early in your child’s life to make the journey easier for you and your child.  Get the support you need!

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