There is no known cure-all way to prevent SUDEP. Currently, the best course of treatment is to encourage and engage in these preventative strategies:
- Advocate for increased awareness by the public and the medical community;
- Maximum seizure control via strict treatment adherence;
- Regular physical activity and lifestyle modifications that reduce stress and seizure activity;
- Patients should regularly visit with their doctor especially if their convulsive seizures are not completely controlled;
- Consider the use of alternative resources such as monitoring devices that detect certain seizures and can alert caretakers and enable early intervention;
- Consider supervision or monitoring during sleep hours to identify seizure activity;
- Ensure that family members and caretakers have knowledge of seizure first aid and of emergency resuscitation measures including CPR and defibrillator use;
- Inquire about and advocate for research that enables a better understanding of the causes of SUDEP.
BIGGEST RISK FACTORS
Uncontrolled or refractory epilepsy (seizures that resist drug treatment) and habitual tonic clonic seizures at night present two of the greatest risk factors for SUDEP. It is important to talk with you doctor about your individual risk level with the end goal to shape a treatment plan that results in the fewest possible number of seizures.
The Danny Did Foundation is committed to serving as a reservoir of information concerning ongoing SUDEP studies and advancements in technologies that may play a role in helping to prevent SUDEP. We believe that educating patients and people who live with epilepsy patients may help prevent SUDEP. By better understanding the issues surrounding SUDEP education in lay and professional communities, we can facilitate the dissemination of knowledge that may help to achieve reductions in SUDEP.
"Education is the most powerful weapon that we can use to change the world." - Nelson Mandela
Solving the SUDEP riddle of SUDEP will be achieved only when specific risk factors are identified and the exact mechanisms of death are determined. As even people with infrequent seizures are at risk to succumb to SUDEP, the work of preventing SUDEP by way of finding even more precise preventative measures that can be prescribed for epilepsy patients is work of extreme importance. The Danny Did Foundation is committed to this work in honor of Danny and all those who have lost a loved one to epilepsy.