Epilepsy & SUDEP

When a person has two or more unprovoked seizures, they have epilepsy. An estimated 2.2 million Americans have epilepsy, with up to 200,000 new cases diagnosed in the United States each year. Approximately 1 in 26 people will develop epilepsy at some point in their lives, and the onset of epilepsy is highest in children and older adults. Epilepsy impacts 65 million people worldwide and is a spectrum that spans more than 40 syndromes. Despite all available treatments, 30 to 40 percent of people with epilepsy continue to experience uncontrolled seizures. In two-thirds of patients diagnosed with epilepsy, the cause is unknown.

Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these. According to advocate group Citizens United for Research in Epilepsy, epilepsy costs the United States approximately $15.5 billion each year. The indirect costs associated with uncontrolled seizures are seven times higher than that of the average for all chronic diseases.

Sudden Unexpected Death in Epilepsy, or SUDEP, is one of the many risks that accompanies a life with epilepsy. According to the National Institutes of Health, SUDEP is the most common epilepsy-related cause of death. The DDF’s approach to making progress against SUDEP is multi-pronged:

  • Challenge and encourage doctors, nurses and all medical professionals to address SUDEP with epilepsy patients.
  • Seek out technologies and devices that serve as seizure detection and prediction systems for home use that sound an alarm and alert others when seizure activity occurs.
  • Partner with The SUDEP Institute, Partners Against Mortality in Epilepsy (PAME), the North American SUDEP Registry (NASR) and others to advance collaborative campaigns designed to combat SUDEP.
  • Offer practical information to epilepsy patients and their loved ones on ways to learn about SUDEP and ways to possibly minimize the SUDEP risk.
  • Utilize our Medical Advisory Board to provide the latest news in SUDEP research and SUDEP-related issues.

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Dear Doctor: My Child Has Epilepsy. Please Tell Me Everything

Tom Stanton, Dad, writer and advocate
Posted: 11/18/2014

Tom Stanton with Nephew Danny
Tom Stanton with Nephew Danny

On Saturday morning Dec. 12, 2009, I was on a gym floor, at an early morning practice in my role as an assistant basketball coach at a high school just outside Chicago. I noticed that I had missed several phone calls from my older brother Mike, unusual for the time of day, but I figured I’d catch up with him after practice. When I called him back, he could barely speak. All he could muster was, “Danny is dead.” His son, my nephew, had been found in his bottom bunk bed by his older brother, John, lifeless.

It was just a few months before Danny’s 5th birthday. When I arrived, Danny’s three siblings had been taken to their neighbor’s house, since his parents had rushed to the hospital with Danny. The kids knew something was wrong, but they didn’t know what. When Danny’s dad returned, John, then 6 years old, asked his dad, “Is Danny dead?” His dad replied, “Yes, John. Danny is dead.”

I’ll never forget that.

A parent’s most critical role is to ensure the safety of their child. But because my brother and sister-in-law did not know the full spectrum of risks that Danny’s epilepsy presented, they were not equipped to create the best possible treatment plan for him. Doctors talk on a regular basis about the various risks that accompany seizures — relative to swimming, bathing, driving, and the possibility of head trauma. To omit the single most significant risk a person can face, death, is both confounding and irresponsible.

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