Angels Of Epilepsy Newsletter
#AOENEWS, articles, blogs, & more!
Support Epilepsy Awareness!
Wear PURPLE on March 26th for National Purple Day for epilepsy awareness! Also, please participate, volunteer, or make a donation to an epilepsy foundation/charity this month. Your support matters because epilepsy lives matter!
We thank you from the bottom of our hearts!
Angels Of Epilepsy
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There's good news for kids with epilepsy. While several new drugs have come out in the last several years for adults with epilepsy, making those drugs available for children and teenagers has been delayed due to the challenges of testing new drugs on children. But an analysis of all the research published on adults and children shows that the positive results seen in adults appear to be similar in children. The preliminary meta-analysis was released today and will be presented at the American Academy of Neurology's 69th Annual Meeting in Boston, April 22 to 28, 2017.
"The results of this analysis may bring new hope for children and teens with epilepsy and their families," said Douglas R. Nordli, Jr., MD, of Children's Hospital Los Angeles in Los Angeles, Calif., and a member of the American Academy of Neurology.
- Article from: News Media Life Science
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NeuroPace, Inc. announced that the 1000th patient has been treated with its award-winning RNS® System, approved by the FDA in November 2013. Similar to a pacemaker that monitors and responds to heart rhythms, the RNS System is the first and only medical device that can monitor and respond to the brain’s electrical activity.
One of those patients is Tammey, a registered nurse, and mother of one. “It has changed my life in so many ways,” she says. “I have the freedom and security that I thought I would never feel again. I am now working on restarting my bucket list!”
A recent study presented at the 2016 American Epilepsy Society Annual Meeting showed that the median reduction in seizure frequency was 72 percent at seven years (N=185). During the seventh year post-implant, 25 percent of patients had a seizure reduction of greater than or equal to 93 percent.1 Additionally, nearly 30 percent of patients experienced at least one six month period of seizure freedom. The study enrolled 256 medically refractory epilepsy patients at 32 Comprehensive Epilepsy Centers in the United States.
Read more: http://www.businesswire.com/news/home/20170228005435/en
- Article from: Business Wire.com
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Meet teen epilepsy survivor and advocate, Saiim Ali
My name is Saaim Ali, I am 18 years old and was diagnosed with epilepsy when I was six years old. I didn’t know much of what was going on at the time but now that I am older I have learned a great deal about myself. Living with epilepsy has not been easy for me. In middle school I had a lot of trouble learning, especially in math and history. I remember asking my dad to help me with math homework and before my dad could finish explaining to me how to figure out the problem I would begin to cry because my brain just couldn’t comprehend the knowledge he was giving to me.
I had seizures all throughout middle school and once I got into high school my medication was switched to Lamictal and I didn’t have any more seizures but the activity was still present in my brain. In class my hands would twitch and sometimes my body would as well. When I talk to my friends or my father I would easily forget what I wanted to say even when I repeated over and over in my head. I have slept for eleven hours before and still feel asleep on my friend. When I wrote free writes or had class discussions most of what I wrote would be on topic first and then go down hill. I also remember crying in class when I couldn’t translate the constitution into simple sentences. I would hear sentences like, “So, I feel tired all the time too,” others would tell me I’m stupid when I said something wrong. There was even a girl who said, “How could you be a math teachers when you are in non-regents math class.” That was the one sentence that actually got me to cry, it made me feel like I couldn’t accomplish anything but I have friends who supported me.
Now, as a senior in high school, who is going to graduate in June of 2017 I have learned to ignore what everyone says. If they call me stupid just smile and brush it off because accomplishing what I set out to do is all that matters to me. My goal, is to be a blogger and motivational speaker that people with or without epilepsy can ask for advice and follow me as I go through life. Also I’ve always wanted to be a writer but I am still hesitant on that. Don’t just think epilepsy is a depressing topic to discuss because it isn’t. It’s a topic I really wish people would talk about more because there are people out there who have it worse than me. Epilepsy is hard to deal with but having friends can really make the difference.
- Saiim Ali
Buffalo, NY
Instagram: @epilepsyandmee
*Angels Of Epilepsy give much thanks to Saiim Ali who will be graduating from high school in June 2017. Keep up the good work and best wishes on your journey!
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A drug used to treat epilepsy could end the misery of migraines for millions of sufferers
Studies suggested the drug, known as Lyrica, stops waves of activity in the brain that cause the migraines — but it had not been tested.
Now experiments on mice have showed it also had an effect on calcium levels, which, if
they fall low, can spark the condition.
Scientists at the University of British Columbia, Canada, said migraines are often preceded by visual disturbances such as flashing lights, shimmering lines and blind spots.
These are likely to be caused by a wave of electrical activity in brain cells called cortical spreading depression — or SD.
- Article from: The Sun (UK)
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Collin May was a terrific 17-year-old who yearned for independence, adult responsibilities and driving privileges just like any other teen. But with 20 seizures a day, these goals were problematic. Since he first began experiencing epilepsy at age 8, May explored all avenues including eight different medications, medical marijuana and a surgically implanted vagus nerve stimulator device. Nothing relieved the seizures.
May's home doctor suggested he schedule an appointment at Cleveland Clinic's Epilepsy Center, where he came under the care of our multi-disciplinary team. Shortly thereafter, May learned that epilepsy surgery may be an option for him. Detailed testing indicated that his seizures were arising from a trouble spot deep inside the brain, but with his normal MRI, our team required more information.
The next step was to record May's brain wave activity directly, with thin probes carefully placed on his brain, targeting the area of concern. This method, called stereotactic EEG, successfully pinpointed the problem and helped us develop a concrete plan for surgery.
-Article from: U.S. News.com
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Multiple sclerosis (MS) is an autoimmune disease of the central nervous system that affects nearly 2.3 million people worldwide. MS is triggered when the immune system attacks the protective covering around nerve fibers, called the myelin sheath. The "demyelination" that follows damages nerve cells and causes impaired exchange of information between the brain and body as well as within the brain itself.
As the protective sheath -- best imagined as the insulating material around an electrical wire -- wears off, nerve signals slow down or stop. The result is impairment to a patient's vision, sensation, and use of limbs depending where the damage takes place. Permanent paralysis occurs when nerve fibers are destroyed by the disease.
As though this were not enough, MS patients are three to six times more likely to develop seizures -- abnormal hyperactivity of nerve cells -- compared to the rest of the population. However, despite increased occurrence of seizures among MS patients, little research has been done to probe why they happen.
Read more: https://www.sciencedaily.com/releases/2017/02/170221142040.htm
-Article from: Science Daily.com
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I'm an advocate
There are many around the world living with epilepsy and some have had the experience of discrimination. Many are looked at differently when applying for a job. Even if an episode occurs while working, some are even let go from their employer. Many children and teens are treated differently as well especially while attending school. And some are bullied and harassed by others.
I'm standing along with the many epilepsy survivors and others living with a disability because I know how it feels and it does hurt. I will continue to advocate and support many. We are human just like everyone else.
I advised others to compliment people, magnify their strengths, and not their weakness. Let's encourage one another. Lift each other when down. Let's be a team! Your support matters because #EpilepsyLivesMatter!
Natalie Y. Beavers
Survivor, Mentor, Advocate
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Angels Of Epilepsy
Email: angelsofepilepsy@gmail.com
Website: www.aoepilepsy.org
Facebook: https://www.facebook.com/aoepilepsy/
Twitter: @AOEpilepsy