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Thank you so much for attending my son's PPT meeting. I really believe you helped the team understand my son's epilepsy. Parent
Faces of Epilepsy
Dan CanfieldGrowing up in a large family, the youngest of 10, it was not too often that I did not have somebody to help me, whether it was with a paper for school or with playing baseball in the backyard.
However, as I grew older and started making friends, I was not as dependant on family members to help me as I once was. That all changed when I turned 17, and was diagnosed with petit mal seizures. Though not as severe as grand mal seizures, this disorder put significant dents on how I lived my life each day. Three years later, with help from my father, I had a temporal lobectomy procedure done at the Boston Children’s Hospital. For a short time, I started believing that the operation had worked, being seizure-free for the first three weeks after I got back home. Not surprisingly, the seizures came back. As disappointed as I was, I moved on with my life and moved to Arizona.
Now, though I always had a neurologist to see in Arizona, there was never one I had a ton of confidence in, nor was there one who was willing to offer any possible cure options, surgical or otherwise. As time went on, the number of seizures increased and began having a huge impact on my job performance, costing me a handful of part and full-time jobs. Not surprisingly, I applied for and began receiving disability. Shortly thereafter, I returned to Connecticut with my wife, Annette, and 11-month old son Eric to be closer to family.
Four years after moving back to Connecticut, I was referred to the doctor whose actions are the reason that I am writing this story: Dr. Susan Spencer. You see, Spencer was the one doctor, since the operation in Boston, who was willing to work with me in hope of eliminating my seizures for good. Dr. Susan Spencer was an advocate for me and presented my case to the Yale Neurology Group to undergo an intracranial EEG with the hope that I would be a candidate for the neuropacemaker.
In the summer of 2009, I underwent an intracranial EEG at Yale. Though things did not go exactly as we would have hoped, doctors were able to find the location of my seizures, which made me a candidate for the neuropacemaker.
Since last year, I have been volunteering with the Epilepsy Foundation. I’m telling my story because I want to give back, hoping that at least some of my stories will inspire people who have become as discouraged as I was prior to meeting the doctors at Yale. I understand far too well the difficulties that epilepsy can create, but I also feel very fortunate to have a supportive family and that I have been able to share my story with many other people.