Angels Of Epilepsy Newsletter
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"Convulsion” is one of several epilepsy terms slated for retirement in the first overhaul of seizure classifications since 1989.
The term is simply too ambiguous for medical usage, says the International League Against Epilepsy, although it admits the term will undoubtedly persist in popular language to describe motor activity during a seizure.
The league’s major update of epilepsy classification takes into account recent advances such as the discovery of hundreds of genes for epilepsy, new imaging techniques and a better understanding of how genetic mutations affect abnormal function.
Read more: http://www.pharmacynews.com.au/news/latest-news/7-key-changes-to-epilepsy-terminology
- Article from: Pharmacy News.com
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A man who allegedly tweeted an animated strobe image to a journalist with epilepsy has been arrested and charged with cyberstalking.
The flashing image sent to Kurt Eichenwald, a Newsweek senior writer and Vanity Fair contributing editor, on December 15 came with the message: "You deserve a seizure for your post," according to the criminal complaint.
Mr Eichenwald said the image triggered a seizure and he then sought to identify the person who sent it.
After a three-month investigation, police arrested John Rayne Rivello, 29 in Maryland on Friday.
-Article from: The Telegraph UK
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Dr. Pankaj Satija and his wife, both immigrants from India living and working legally in Houston, were abruptly told by immigration officials they had 24 hours to leave the United States.
A new policy, they were told, no longer allowed them to extend their temporary permission to stay while they waited for permanent authorization.
The two doctors, who have been here legally for more than a decade and are highly specialized in their fields, were first astounded, then hysterical. Satija had 90 patients scheduled before the end of the week.
"I was breaking down every two hours," said the 40-year-old neurologist who helped found the Pain and Headache Centers of Texas and performs about 200 operations a month.
- Article from: Houston Chronicles
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Meet JenVon Cherry, epilepsy survivor and advocate, in Georgia
A six-year-old girl goes to school one day, thinking it was going to be the same as the last day and the day before that. However, young JenVon Anjery Cherry didn’t know that this day was going to drastically alter the rest of her life forever. The event that happened that day impacted her in unimaginable ways, and through endless battles, heartache and ultimate acceptance, JenVon has chosen to share her story with Angels Of Epilepsy....
How it began
“I lived in D.C. and a classmate actually stabbed me in the eye with a pencil, and the pencil lead lodged itself in my left eye and the lead hit a nerve, and from there I was diagnosed with epilepsy. It was due to the trauma,” JenVon said.
Following this traumatic experience that happened to Cherry in class, the doctors were able to remove the pencil lead, but there was still a fracture to the brain that was causing swelling. Hesitant because of her age, Cherry’s parents decided to decline anymore surgery and Cherry later went home to begin living with this condition.
So what is epilepsy? Epilepsy is a chronic disorder in which recurrent, unprovoked seizures occur. Many people with epilepsy experience more than one type of seizure and may have other symptoms of neurological problems as well, according to epilepsy.com.
“I have Petit Mal seizures, and usually more Absent Mal seizures. I usually don’t know when I’m about to have a seizure, they usually just come,” JenVon said. “I call the ‘bossy,’ because they have more of an attitude and come whenever they want to. What happens during a seizure can be different. Most of the time I have seizures in my sleep, but sometimes I can have a staring seizure, where I’m not really blinking, I’m just in a daze looking at something and I stop talking. I can have a seizure where I start jumping up and down, and not really paying attention to anything.”
Having had this distressing event happen to her at a young age, the thought of it resulting into something that potentially affected her life for the long-run was a difficult realization to comprehend, for JenVon and her parents.
“In the ‘80s no one really knew much about epilepsy, so I was in the hospital for three months, almost four,” JenVon said. “I had all my hair shaved off and I had multiple seizures every single day. My mom quit her job because I was in the hospital for so long. But just imagine being six years old, in the hospital and having testing done with needles, and I was being put to sleep for all the types of tests. It wasn’t a good experience for me, I can only imagine how my mom and my dad felt watching me go through that.”
JenVon is 34 now, and is currently the Enrollment Service Assistant Sr. at Georgia State University. She has come a long way since that fateful struggle so many years ago, but her mind didn’t reach a point of ease effortlessly. For Cherry to obtain the acceptance and contentedness she feels today, she had to endure 24 years of pain, humiliation and theological catechism.
A true coming of age story
When being diagnosed with epilepsy, JenVon had to drastically change her routines and comforts to accommodate this new hurdle.
“I definitely had to start watching things that I eat, just because I take so much medicine,” JenVon said. “Even though I don’t know if it works, because I still have seizures, I still try to watch what I eat. I try to exercise, drink a lot of water and I try to get a lot of sleep. Because I know that can fluctuate, and I can have a seizure if I don’t get enough sleep or drink a lot of water. Stress is definitely a main reason, about 90 percent of people who are stressed have seizures [according to JenVon]. I know with me, if I’m stressed out, I will definitely have a seizure.
Aside from altering routines, Cherry had to also face the aspects of being a teenager. Growing up during one’s teenage years is hard enough, it consists of constantly questions oneself, boys and girls, school and their parents. However, Cherry had to add one more obstacle on that list for herself, questioning the arrival of a seizure.
“In high school it was hard for me, I didn’t like to tell people I had epilepsy or seizures. I felt like people didn’t want to be my friend if people knew I had seizures. I didn’t like to tell my friends everything I was going through, I kept a lot to myself. I had a huge seizure during my junior and senior prom. It was horrible, but I think to actually see my friends be there was nice. But for me it’s very vulnerable for someone to see me in that state, so it was very hard for me to go four years in high school and not let anyone know the things I was going through personally and on a regular basis. But I did my best to try and keep a good social life, I cheered at school,” Cherry said.
These occurrences, unfortunately, did not fade when JenVon entered college. The experiences she went through then was more a realization of how ignorant and harsh people can be toward someone who was different, it was a bitter pill to swallow.
“I remember in my freshman year of college I had to tell my roommate that I had epilepsy, and what to do and what not to do,” Cherry said. “But I didn’t know that she went to go tell the dorm director because she felt like me having epilepsy was something that she can get. I think the worst part was that we had a dorm meeting with 800 girls that stayed in that dorm about me having epilepsy, and how it wasn’t transferable, like a cold. That was the most embarrassing part of my freshman year.”
JenVon felt the urge to transfer schools at that moment, but she held her head high and understood that she couldn’t alter another’s way of thinking at the time, but she could eventually try. This mentality helped her devote her time to epilepsy organizations that would help her learn more about her condition, and help those that are dealing with the same battle.
One in the same
JenVon lived in Charleston, S.C. and decided to take part in the South Carolina Advocates for Epilepsy.
“On Christmas we would volunteer and give other people who have epilepsy some sessions, where doctors would come in and tell us new things,” Cherry said. “Things that we didn’t know about. I like doing things like that because I always want to keep myself up to date and informed.”
It was through volunteering, at 30 years old, that Cherry finally found peace with her condition. After spending time volunteering, she met a woman that not only knew what she was dealing with, but also gave Cherry the help to reaffirm her beliefs and strength.
“Because [I was] constantly getting sick and being taken to the hospital and taking so much medicine, it’s almost like ‘why did God have to give me this cross to bear?’ But when I turned 30 I met this lady who was volunteering, her name was April. I told her exactly how I was feeling, how I never felt okay with myself having epilepsy and seizures. She told me then that ‘you have to feel okay with yourself, this is something that may not go away and you have to be confident, and whomever doesn’t want to be in your life, doesn’t have to be in your life. If God gave you this cross to bear, you bear it and you speak about it, and you take it with pride.’”
When Cherry gained this perspective, she became more aware of other aspects she wanted to confront and change for the better, like the dynamic of the African American community and the knowledge of health revolving epilepsy.
“I chose to tell my story because the African American community can sometimes be a little shunned about illness that definitely is in the African American community, but they just don’t want to talk about it,” Cherry said. “When I tell a crew of African Americans you have epilepsy, they go ‘okay.’ What else can you talk about when they don’t know much about it? But if I were to talk about it with ten other white people, they would be very intrigued and want to know. I’ve never understood why African Americans are so shunned to not knowing facts, because sudden unexpected death happens with African Americans. Normally, we are the ones who die from having a seizure in our sleep or die from having a seizure, period. Me being a black person, I wanted to speak and tell my story and make others aware that this is a real thing that goes on.”
JenVon will never stop having to face obstacles in her path, especially with Trump’s potential repeal for Obamacare affecting millions of people’s healthcare and also some additional testing Cherry is planning for the summer of 2017. However, these upcoming milestones are just a few more JenVon is ready to take on.
“I just want people to know that my journey has been hard, but where I’m at in life, I’m at peace,” JenVon said. “I’m happy, and I believe everyone has a journey in life and a story. This is mine and I’m just trying to share it.” My ultimate goal is to start my own non-profit in the next year. Hopefully with hard work and determination that will come true.
Thank you so much Natalie Beavers and Angels Of Epilepsy for giving me a voice on your platform!
JenVon Cherry
Registration and Compliance
Georgia State University
Angels Of Epilepsy thanks JenVon Cherry for taking time to tell us her journey living with epilepsy and her encouraging words to keep going and not give up. Salute JenVon Cherry!
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Dr Paresh Doshi, Director of Neurosurgery, Jaslok Hospital & Research Centre along with his team of doctors embarked on a rare Deep Brain Surgery of nucleus accumbens on an autistic & epileptic patient. Pamela Mehra, USA based 42-year-old women was diagnosed with Autism at the age of 3.
Over a period, she was found out to lose all social interaction and become a virtual mute, her communication with her family member would be by hand signs and actions. Before she was brought to Jaslok hospital, her condition was severe, and she suffered from obsessive-compulsive behaviour and aggression besides autism and epilepsy. This aggressive nature was mostly towards herself and her relatives. She suffered from OCD and was obsessed about organising the position of objects and people in her surroundings.
-Article from: TheHealthSite.com
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A baby born recently in San Diego County is the first in the region to suffer devastating birth defects after the infant’s mother contracted Zika virus while traveling abroad.
Public-health officials said the case, announced Tuesday by the county government, is a tragic reminder that the risk of Zika infection continues in warmer climates even though mosquitoes are currently dormant here in San Diego.
(While) there is currently no local spread of Zika, we still want to remember that we all have to be vigilant in protecting ourselves and our community from diseases like this,” said Dr. Sayone Thihalolipavan, a deputy public health officer with the county Health and Human Services Agency.
Read more: http://www.sandiegouniontribune.com/news/health/sd-me-zika-birth-20170328-story.html
-Article from: The San Diego Union-Tribune
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Let's advocate and stand up for the many living with epilepsy!
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