This past Saturday, thousands of people gathered in Washington, D.C., to walk with the goal of making a difference in the lives of those who have epilepsy. The National Walk for Epilepsy—an event that has grown in size and scope each year—is sponsored by the Epilepsy Foundation and strives to increase awareness of the potentially life-threatening disease and garner support for research advancement into new treatments and a possible cure.
It is estimated that more than 2 million people in the United States have epilepsy or other seizure disorders. Although that is a lot people, I want to take a moment to talk about a small segment of those people you may not have heard much about. Of the people living with epilepsy, a small portion of them have something called Lennox-Gastaut Syndrome (LGS). Less than 5 percent of cases of childhood epilepsy are classified as LGS, and children with the condition typically develop it between the ages of 2 and 6. LGS is characterized by multiple seizure types (and the seizures are largely uncontrolled, despite medication), moderate to severe cognitive impairment, and abnormal electroencephalogram (a test that measures and records the electrical activity of your brain by using sensors (electrodes) attached to your head) results.
LGS is rare, and there is no cure. LGS can be devastating. And it happens to affect my family personally. My 4-year-old great nephew, Justin, was diagnosed with LGS in 2012. He sometimes has as many as 30 seizures a day, and when he is seizing, his brain is unable to function properly, so he is unable to learn like other children his age.
Treatments for LGS range from dietary therapies and medication to surgery. My nephew has a vagus nerve simulator implanted. The simulator delivers electrical impulses to his brain in the hopes that it will help control the seizures.
Because there is no cure for LGS, and because in about 30 to 35 percent of cases of LGS, the cause is unknown, there is a great need for research into the disease. But, the fact that it is rare means that it is also often difficult to get funding for needed research. That’s why events like the National Walk for Epilepsy are so important. In addition to providing services for people living with epilepsy and providing awareness programs, the money raised from the walk goes toward research to help find better treatment options and hopefully a cure.
But this cause needs more than money. It needs a louder voice. We can’t let those living with LGS battle alone. We can join their army by raising awareness and increasing the dialog about this rare form of epilepsy that often leaves its victims without a voice of their own. Efforts by health communicators, educators, and practitioners could make a significant difference in the lives of those living with LGS. Last month, we celebrated Rare Disease Day, where people all over the world joined together for better care of those with rare diseases. Let’s give kids like my nephew more than just a day. Add your voice to the call for more research and treatment options for LGS!