Sitting on the plane home from San Diego today—next to a woman with epilepsy—I am reminded that it is international epilepsy awareness day. Awareness is the first step towards funding for critical research. Epilepsy is not a benign condition where you take a pill and everything is okay. Three million Americans—many of them children like Calvin—and their families suffer from epilepsy. One in twenty-six Americans will be diagnosed with epilepsy within their lifetime. Statistics for the rest of the world vary with the most numerous and often severe cases existing in developing nations where treatment is difficult and costly to obtain.
This video may be difficult for some to watch, though important for understanding the true nature of this heinous, pervasive, misunderstood, neglected disorder.
Ask yourself, what if this were my child?
Please share.
This video may be difficult for some to watch, though important for understanding the true nature of this heinous, pervasive, misunderstood, neglected disorder.
Ask yourself, what if this were my child?
Please share.
Now what are the odds of you sitting next to someone with Epilepsy? What a strange but good connection.
ReplyDeleteThis is a hard video to watch, even having seen seizures myself but I agree that it's helpful to see that seizures look different than what we may think.
Sophie's seizures look nearly identical -- at least once and sometimes up to five times a day. While I haven't grown used to them, I can watch Calvin without panic. It's your voice that kills me.
ReplyDeletei suppose the odds are 1 in 100.
ReplyDeleteHaving had seizures for 20 years, it still makes my heart tumble to see someone else's seizures. Empathy is a beautiful feeling.
ReplyDeleteMy daughter's seizures are very similar to Calvin's. She was having up to 50 per day for the past 12 years since being diagnosed with brain cancer in 2000. Last October we added Onfi to her medications and she has not had a seizure since! We are grateful for every seizure free moment, because as you mentioned-a pill is not a cure. Statistically she will most likely not remain without seizures forever. It is sobering. My heart and prayers go out to you and sweet little Calvin.
ReplyDeletedear sylvia, very sorry to hear about so many seizures but great that the onfi has stopped them! one of calvin's meds is onfi though he still has seizures. very stubborn. thank you for reaching out.
ReplyDelete