A Dream is a Wish that Your Heart Makes

Daniela’s Wish …. No more twitchies! A mother’s story of living with the challenges of her daughter’s seizure disorder — Dravet Syndrome, a rare and catastrophic form of epilepsy.

Funny thing, but I knew from conception that I was going to have a girl and I would name her Daniela (in honour of my husband’s sister, may she rest in peace). My husband believed I ‘willed the baby’ to be a girl, our special angel. Little did we know how special Daniela would be! As a first time mom, I doted on my little one…with every cry, with every whimper, I was there for her. Even when my own mom would say ‘let her cry it out…don’t pick her up right away…she has to learn to soothe herself…thankfully I did not listen. I wanted to be with her always, to protect her, to swaddle her, to love her. And on that fateful day, February 10, 1993, when she cried out to me from waking from her afternoon nap, I ran to her…I couldn’t wait to be with her. But when I went to her crib, what I found changed my life; my daughter’s life; our family’s life….Daniela was lying limp, unresponsive, unconscious and [...] continue the story

Shifting perspectives on Epilepsy

By Trevor Park October 2011

I have been dealing with my epilepsy ever since I was 13. I started getting grand mal seizures lasting anywhere from 30 seconds to a few minutes. I would black out, and the seizures would leave me confused, sore and usually lying on the ground.

Having seizures changed my outlook on life. I realized: stepping into the pool, bath or spa was now a potentially deadly activity. I wouldn’t be able to skydive, ocean dive or rock climb. And say goodbye to driving, that great leap from adolescence to adulthood. The only thing worse than being the only kid in high school who can’t drive is having gotten your license and then having it taken away.

You have to be seizure-free for one year to drive. I made it a year—but not much longer. When my parents were away, I took their car and was driving to a friend’s house when I had a grand mal seizure, lost consciousness and smashed into a lamp post at 80 kilometers an hour. Like that, my driving days were over.

I wanted to know: how can I fix this problem? How can I lead a normal life? The neurologists I saw said the [...] continue the story

Epilepsy: Replacing fear with calm

By Megan Kennedy October 2011

When I was seven years old, I began having seizures and was diagnosed with a large arteriovenous malformation (AVM), an abnormal connection between the arteries in the brain. Mine were usually complex partial seizures, impairing my awareness, although I also had one to three grand mals a year, which knocked me out.

I had brain surgery in 1990 to remove the AVM. During the surgery I hemorrhaged and lost 17 units of blood. My neurosurgeon induced a coma. When I came out of the coma, I was paralyzed on the right side, had difficulty speaking, and my vision was impaired. I was in rehabilitation for four months, though my actual recovery took more than a decade.

Tests showed that the malformation in my brain was gone. But I still had seizures, an average of three to five a week, depending on stress level, fatigue and other factors.

I tried virtually every anticonvulsant (12 at last count), including Dilantin, Tegretol, Lamictal, Vigabatrin, Topamax, Klonopin, Zonegran and Lyrica. In conjunction with the medications, I tried the Ketogenic diet, neurofeedback, Chinese herbs, acupuncture, transcendental meditation and other approaches. Nothing worked.

I felt anxious and afraid. Socially I felt isolated.

Then, in 2003—when I was 26 [...] continue the story

The Talking Treatment

Joshua Kors is an investigative reporter for The Nation, where he covers health issues. He is the winner of the National Magazine Award, George Polk Award, IRE Award, the National Press Club’s Hume Award, the Mental Health Media Award and many others. His reporting on health issues has been featured on PBS, CNN and the BBC. He also collaborated with ABC News’ Bob Woodruff on “World News Tonight” and “Nightline” investigations, part of a series on health issues in the military, which won the Peabody Award.

He has written extensively about his own epilepsy. The following article was completed in May 2003, as his master’s thesis for the Columbia School of Journalism. This version has been updated to include reporting on his epilepsy experience in the 8 years since its original publication to October 2011. ♦ ♦ ♦ May 2003 The Talking Treatment Looking at a New Approach to Epilepsy  By Joshua Kors

Even today I have a hard time talking about my epilepsy.

Though it’s been 11 years since my first seizure, five years since I last saw the inside of an ambulance, I still feel my stomach constrict when the topic comes up.

There are reasons, I suppose. In a sheltered life lived in the suburbs, epilepsy [...] continue the story

Alternating Hemiplegia of Childhood: Determination Bears Hope

This video tells Matthew’s story, and his struggles with the rare disease alternating hemiplegia of childhood (AHC).  It is bouts of temporary paralysis, seizures, and significant cognitive impairment.  his determination to not let the disease stop him has inspired his father to become president of the AHC Foundation as of August, 2010.  The AHC Foundation has facilitated groundbreaking research since then, and is looking to have a tremendous positive impact in 2012 for all suffering from AHC. Will you join in that fight and be that 1 in a million?