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Batten Disease Fast Facts
Batten disease is a name for a group of fatal neurological disorders also known as neuronal ceroid lipofuscinosis (NCLs). The term Batten disease once referred to only one type of disease, but now it is often used to describe the entire group of NCLs.
Batten disease is estimated to affect between 2 and 4 out of every 100,000 children in the United States. In some parts of the world, the rate might be as high as 1 out of every 12,500.
Batten disease is a genetic condition that is passed from parent to child. Some people carry the disease-causing genes but aren’t affected by the disease themselves. These carriers can pass the disease-causing gene on to their children.
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There is no cure for Batten disease, and all forms are eventually fatal.
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Batten Disease Caregiver Tips
A diagnosis of Batten disease is devastating for any parent. There are some things you can do to help your child and your family to live with the disease and to treasure the time that you have together.