Epilepsy organizations could benefit from the lessons of a systems of care approach

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princessGuest blogger - Princess Katana - Did you know that 1 in 26 Americans will develop epilepsy at some point in their lifetime? That this makes epilepsy one of the nation’s most common neurological disorders, along with migraine, Alzheimer’s disease and stroke? Or that most of the 150,000 people that will be newly diagnosed with epilepsy will be children and older adults? Since I started working at the Epilepsy Foundation I’ve learned that most people don’t know much about epilepsy, and many still believe some of the century old myths about the condition, like that a person who is having a seizure can swallow his/her tongue. This is NOT true, and inserting an object like a spoon or another hard object into a person’s mouth can cause serious injuries to the teeth and gums.

Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. When a person has two or more unprovoked seizures, they are considered to have epilepsy.  A seizure happens when a brief, strong surge of electricity affects part or all of the brain. Seizures can last from seconds to a few minutes. People with epilepsy can have many symptoms, from convulsions and loss of consciousness to blank staring, lip smacking, or jerking movements of arms and legs.

As the new Director of Multicultural Affairs for the Epilepsy Foundation, I read the 2012 Institute of Medicine (IOM) report Epilepsy across the Spectrum with great interest. It recognizes epilepsy as a spectrum of disorders that involves more than 25 syndromes, affecting not only people living with epilepsy, but their families and communities. For the person with epilepsy the condition means much more than living with unpredictable seizures, it means facing a myriad of challenges at home, in school and at work; it means uncertainties about developing friendships and relationships, and questions about the ability to drive a car and to live independently.  The report examines the range of community services –day care and school, employment, transportation, housing, sports, recreation and other support services- that impact the quality of life of people with epilepsy and their families. I thought: the epilepsy world would benefit from a Wraparound approach to service delivery. Here are a few reasons why:

It seems to me that epilepsy organizations across the country could benefit greatly from what the system of care communities have been able to accomplish over the past 20 years. I know that children and youth with epilepsy and their families face many of the same challenges, including stigma, that children and youth with mental health needs and their families face, including mental health needs. Oh, and I haven’t even mentioned psychogenic non-epileptic seizures yet… well that is for another day.


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