According to a number of professionals it is very uncommon, but not unheard of, for someone to die as a result of a seizure. However uncommon translates to approximately 45,000 deaths per year, which is approximately the same number of people who die from breast cancer or traffic accidents. We never knew it could change our lives in such a dramatic way. Coping with the symptoms of epilepsy was nothing compared to losing our 22 year old daughter Afton to SUDEP (the sudden, unexpected death of someone who suffers with epilepsy). SUDEP strikes quickly. A seizure occurs, the brain malfunctions, the heart responds with a cardiac arrhythmia causing it to stop and the individual quits breathing. Death usually occurs within minutes. So why are we not talking about this topic more? Why is epilepsy and SUDEP rarely discussed, even among those who suffer with it? Maybe it is because ‘Rare’ and ‘very uncommon’ are what patients hear from medical professionals when they ask the question, “Can I die from epilepsy?” And if the question is never asked, SUDEP usually NEVER gets discussed at all. In fact most Neurologists argue among themselves as to whether or not they should tell their epilepsy patients about SUDEP. Most who do inform their patients about the possibility of dying from epilepsy, do not do so until the patient reaches the age of 17 or older, as a collegiate lifestyle increases the risk for SUDEP. However, more times than not, parents and patients are left in the dark about the true consequences of epilepsy until something tragic occurs. We were never told Afton could die as a result of her seizures. However, we often had discussions with our medical team about the consequences of getting pregnant and the importance of taking folic acid, should Afton become sexually active. Seizure medications cause birth defects. Her pediatric neurologist, who we loved, prepared her for the what “ifs” should she get pregnant. I remember him even showing her photos of what a baby with birth defects might look like. This topic was probably discussed at every single visit she had beginning around the age of 11 or 12. But not one time, did anyone she ever saw for consultation or follow-up discuss SUDEP or the risks associated with epilepsy that could literally take her life without any warning. We simply didn’t know this could happen. Today in the US, approximately 3 million people suffer with epilepsy and worldwide the total exceeds 6 million. The number of individuals affected by this disease outnumbers those who suffer with Autism (1.5 million), Parkinsons (1.5 million) and MS (400,000) and yet those diseases get attention on a daily basis. Public leaders, large organizations and the entertainment industry highlight the need for more awareness in these areas and yet Epilepsy goes unrecognized. Fundraisers are held, research is conducted and information is broadcast across the country and our world informing people about ways they can help draw awareness to breast cancer, diabetes, and so many other life threatening diseases and yet we are silent when it comes to the effects and loss of life caused by epilepsy. We can no longer ignore the impact of epilepsy and SUDEP among our children and families in America. People are suffering on a daily basis. Young people are dying every day and we still don’t know the reason why it happens. Start a conversation, share this information with a friend, wear a purple ribbon, donate to the epilepsy foundation, support the research needed to start fighting this disease and decreasing the number of children who never grow old enough to get married or graduate from college. The time is now to make a difference and put an end to the silence.
