A Spectrum of Severity

Epilepsy affects individuals to varying degrees. The spectrum of disability it creates is broad, ranging from a very limited effect on the individual to a devastating impact on all aspects of life. For a majority (perhaps as high as 80 percent) of people with epilepsy, seizures can be substantially reduced or completely controlled, enabling people to live normal or close to normal lives. For the remaining 20 percent, epilepsy is truly disabling, marked by frequent seizures, other impairments, memory and other cognitive effects, and a highly compromised standard of living.

Children whose seizures are not well controlled often experience social, emotional and academic problems that compromise various stages of development. These problems commonly extend into adult life, where the same issues become chronic barriers to employment and independence. For many other children and adults, the level of functioning actually falls somewhere between these extremes.

There are three categories of severity — uncomplicated, compromised, devastated — among students with seizure disorders. These definitions can also be applied to adults whose epilepsy began in childhood, namely:

• Those whose condition is uncomplicated because the seizures are controlled with medication;
• Those whose condition is compromised because of social, emotional and educational (cognitive) problems; and
• Those whose condition is devastated by virtue of multiple problems.

The severity of the seizures, the effects of the medication, and the neurological status of patients all interact to produce these characteristic levels of functioning.

Uncomplicated

Children and adults in this category are likely to have gained control of seizures fairly rapidly; have no or very infrequent seizures; experience limited if any side effects from medication; are cognitively intact (although memory problems are commonly cited across all levels of severity); and have no additional physical or mental impairments.

While social issues based on society’s reaction to epilepsy also affect people across all severity measures, they are likely to be less disabling for people with uncomplicated epilepsy. Educational/employment problems among this group may occur, but their impact is relatively benign.

Compromised

People in this category have seizures that are usually controlled and do not have serious mental or motor deficits. However, they are typically more likely to experience side effects from medication; they take higher doses to maintain control; and they are likely to experience a greater level of social, emotional, and educational/employment problems.

Devastated

Children and adults whose lives are devastated by epilepsy are likely to have epilepsy as a result of brain disease or injury that also impairs learning, memory, attention, and motor and emotional function. Their seizures probably started early in life and may never have been controlled despite the use of multiple medications and combinations of medications. They are likely to be heavily medicated; they may experience some retardation or slowing; have difficulty in maintaining family support and social relationships; require help in everyday living; and may be more susceptible to bouts of continuous seizure activity (flurries) and status epilepticus. People of all ages in this category have a lifelong need for services and are substantially limited in their ability to function independently.

The risk of seizure-related deaths is increased among people with poor seizure control and other neurological problems; sudden unexplained death occurs across all three groups.