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Epilepsy is too common to get so little funding and exposure

Epilepsy is too common to get so little funding and exposure

By Rachel Ward-Mitchell of the UK

In the United States, the statistics are staggering. About one in 26 Americans will develop epilepsy. More than two million Americans have epilepsy.

But while epilepsy is one of the most common neurological conditions in the nation, but public understanding is significantly limited.

Individuals with epilepsy face a number of everyday challenges, including accessibility to specialty care, finding affordable of medications, side effects of medications, social stigma and fear of losing control. Many individuals with epilepsy also suffer from anxiety and depression problems, and many continue to have seizures despite multiple therapies. In addition, many individuals do not realize that a person can have a seizure and still appear “normal.”

Those of us who work daily with individuals with epilepsy understand the need for increased accessibility and education. We also understand the profound impact it can have on a person’s general health and well-being, including the psychological and social implications and ability to be productive members of a community.

In April, I was privileged to be invited by the Epilepsy Foundation to attend the “Speak Up and Speak Out Program” to speak on behalf of those living with epilepsy.

We were invited to speak to the health care liaisons from the offices of Sen. Mitch McConnell, Congressman Ben Chandler, Congressman Ed Whitfield and Congressman Hal Rogers. The liaisons listened to the story and the struggles we face daily to improve the lives of those living with epilepsy.

What I found so astounding was that every one of the health care liaisons we spoke with shared a story of someone they know who has epilepsy, whether it was a personal friend, a colleague, a grandmother or a childhood friend.

Our message was simple. We want to work to help people understand this condition. We want to improve the quality of life for those who are affected by epilepsy. We want to support research. We want to educate the public. And to do all these things, we need the continued financial support of the federal government.

If you or a family member or friend has been diagnosed with epilepsy, talk about it. Become engaged in educating your community on epilepsy. Teach them how to respond if someone around them has a seizure. Learn about your diagnosis and your medications. Help others. If your seizures are not well controlled, seek help. Contact the Epilepsy Foundation. Be involved in the solution. People are listening.

Rachel Ward-Mitchell is the epilepsy nurse coordinator in UK HealthCare’s Kentucky Neuroscience Institute.

Read more here: http://www.kentucky.com/2012/10/20/2378635/epilepsy-too-common-to-get-so.html#storylink=cpy

 

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