Sibling perspectives: Learning from a brother or sister with a rare epilepsy

(BPT) - There are many different types of epilepsies (the fourth most common neurological disorder in the U.S.); but rare forms of the disease can be especially debilitating and disruptive.

These include infant- and childhood-onset developmental epileptic encephalopathies (DEEs, more simply called “rare epilepsies”) characterized by unpredictable and often prolonged seizures, frequent medical emergencies and hospitalizations, lifelong cognitive and other developmental delays, and, in some cases, a higher risk of premature death. These rare epilepsies occur in a small number of people, but their impact extends to the entire family who often serve as primary caregivers and who live with around-the-clock worry for the well-being of their loved one with the disease.