When we talk about Batten disease, we often focus on what can be seen: the seizures, the regression, the loss of speech and vision. While these things should be acknowledged, the emotional weight shouldered by caregivers, which often goes unseen, also deserves to be discussed. Caregivers manage…
Most people with juvenile Batten disease meet diagnostic criteria for at least one lifetime psychiatric disorder, according to a new study based on interviews with parents of 20 patients in Norway. The most common psychiatric diagnoses reported in the juvenile Batten patients were anxiety disorders and attention-deficit hyperactivity disorder…
Becoming educated and informed about Batten disease is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your journey.
There is no cure for Batten disease yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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