When you or someone you love is living with seizures, it is natural to have concerns about safety. Most people take steps to limit the risk of injury from things like swimming by making sure they never swim alone or driving by following the law and waiting the required amount of time after a seizure to start driving again, which in Pennsylvania is 6 months. There is another mortality risk for people with epilepsy, and unfortunately it is one that often people hear about for the first time after losing a loved one: SUDEP.
Although there are many people researching the causes, risk factors, and ways to prevent SUDEP, there is still a lot that we do not know for sure. According to the CDC, most, but not all, cases of SUDEP occur during or immediately after a seizure and possible factors that lead to death include breathing, heart rhythm, or a combination of both breathing and heart rhythm.
The main risk factors for SUDEP include uncontrolled or frequent seizures and generalized tonic-clonic seizures. Other risk factors may include seizures starting at a young age, having seizures for many years, missing doses of medication, and drinking alcohol. The suggested ways to prevent SUDEP include trying to control your seizures by taking your medications as prescribed by your doctor, avoiding seizure triggers, avoiding excessive drinking of alcohol, and making sure you get enough sleep. In some studies, death was prevented in near-SUDEP cases with intervention from another person. Train your friends and family to recognize and provide first aid for seizures, and, if you have seizures that involve several seconds of sustained movement, you can research movement detection monitors that can alert your loved ones of a nocturnal seizure.
No bulletin at the moment
SUDEP stands for Sudden Unexpected Death in Epilepsy and occurs in 1 in 1,000 adults and 1 in 4,500 children with epilepsy each year.
We lost our amazing son Mason on February 13, 2015 to SUDEP, Sudden Unexpected Death in Epilepsy. He was just 20 months old. In addition to his big brother Devon, Mason now has two sisters, Emily and Hannah. Together, and with the help of both sets of grandparents, we have organized an annual golf outing called the Mason Langford Memorial Golf Tournament. The proceeds from this event are used to help us and the Epilepsy Association of Western and Central PA to create resources like this Mason Langford Center for Support and Learning on SUDEP (Sudden Unexpected Death in Epilepsy). We’re also helping to support high school scholarships, sending children with special needs related to their seizures to a weekend camp called Camp FireFly, providing emergency medications to those in need, helping families with travel assistance so they can get a second opinion on diagnosis and treatment and more.
Our mission is straight forward. We want to help increase awareness of SUDEP. We want to create a safe environment where families can learn, listen, share and connect to one another and resources. We want to help one another celebrate the lives of those we’ve lost because they were with us and are with us still. And, we want others to know and remember them too.
We’d like everyone to understand that the parents of children living with epilepsy are continuously on edge wondering when the next seizure will strike and what will be the outcome. We know that parents also live with vague answers from neurologists that are trying their best to understand their child’s brain, but simply cannot answer complex questions. It’s a constant plea for defined answers on what is happening to our children.
So, here, we hope you might find a few answers, connect with a friendly story, discover a new resource, and perhaps join us in honoring and remembering those we have lost to SUDEP and epilepsy.
Amanda and Matt Langford
“And, still we celebrate, because Mason was here with us!”
If you would like to help, please consider making a donation.