Epilepsy

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"Hi, I'm Rainey and I live in Fort Worth, Texas! Although I wasn't formally diagnosed with epilepsy until January 2014 (age 20), I have been having seizures since I was thirteen years old (I was told they were migraines). I had two tonic clonic seizures within three days in January ‘14, so at that point, I still only had a pediatric neurologist, but we had no option but to go and see him. When I went to see him, he mentioned "epilepsy" and I remember thinking, "No, I don't think so. Just refer me to the other doctor." I immediately started an anti-epileptic medication. So when I went to see the new neurologist, my diagnosis was: Temporal lobe epilepsy, right side, apparently "text book case" (and I'll never forget that he said that.) The EEGs, MRIs, CT scans, PET scans, lab work, hospital stays, experimenting with medications, etc. began. I started visiting Cleveland Clinic in Ohio for a second opinion in 2016- medication wasn’t helping. Long story, short: February 2017 I had an SEEG at CC, where they inserted 19 electrodes into my brain to pinpoint where my seizures were coming from! Cleveland Clinic felt confident about all of the information they were able to collect from this crazy ol' brain of mine in the two weeks I was there. I returned in six weeks for my brain resection! The surgeon resected my superior temporal gyrus (right side) which required a nine inch incision and a craniotomy. I was in the hospital for only three days after brain surgery. How wild is that?! My resection was April 2017. Unfortunately, it was unsuccessful. My seizures have lessened in severity, usually, but have increased in frequency. Here’s to seizure freedom (one day). I truly love sharing my epilepsy journey with others- I hope to educate people & empower others to break down the stigma." @raineymad

 

"Kteodesigns creates pieces geared towards mental health she tries to make wearables a way to connect people and health and well-being. Since jewelry is such a personal thing she believes it has not only the power to attract but the power to perhaps aid in mental well-being. Currently she is exploring how Service design and jewelry can help one another by using jewelry to create meaningful and positive experiences through interaction and conversation.” @Kteodesigns

 

“When my daughter was born with a rare genetic condition I was obviously devastated and couldn’t stop myself from imagining our future with a profoundly disabled child. After talking to some families with the same condition and watching videos of their children walking and doing so much more than the depressing scientific papers described I began to feel more hopeful for the future. Then, a few months after she turned one, she began having seizures. She was diagnosed with epilepsy not long after that and put on a common anti-seizure medication. Her development pretty much stopped. She became much more fatigued, had far fewer ‘good days’ and my hope started to ebb away. This is what epilepsy does. It gets in the way of life; it rears its ugly head when things finally start to feel manageable. It cancels holidays; it results in prolonged hospital stays; it creates sleeplessness and anxiety, and it brings a whole other unknown to the picture. People may be surprised to hear that doctors don’t understand epilepsy, at all. They don’t know what causes it (other than a problem with the brain). They don’t know why some medications work on some people and don’t on others. They don’t know why some people grow out of epilepsy whilst others get worse. I fear this is going to be Willow’s biggest and most difficult fight. This is why I want to bring awareness to the disease that is epilepsy. By wearing my purple AWARE necklace I will hopefully create more discussion and understanding of epilepsy with friends and strangers alike becoming more aware of the emotional toil this disease takes on the whole family.” @welliesandwillow

Epilepsy

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Epilepsy