Clinical Characteristics of Epilepsy in Resource-limited Communities in Punjab, Northwest India

Abstract, originally published in Epilepsia

Objectives: To describe clinical characteristics of a community-based epilepsy cohort from resource-limited communities in Punjab, Northwest India.

Methods: The cohort was gathered following a two-stage screening survey. We cross-sectionally examined and followed-up the cohort for one year. A panel of neurologists assigned seizure types, syndromes and putative aetiologies and categorized drug?responsiveness.

Results: The cohort of 240 included 161 (67.1%) men, 109 (45.4%) illiterates and 149 (62.1%) unemployed. Current age was > 18 years in 155 (64.6%) but age at epilepsy onset was < 18 years in 173 (72.1%). Epilepsies due to structural and metabolic causes were diagnosed in 99 (41.3%), but syndromic assignments were not possible in 97 (40.4%). After one year, drug-resistant epilepsy was established in 74 (30.8%). Perinatal events (n=35; 14.6%) followed by CNS infections (n=32; 13.3%) and traumatic brain injury (n=12; 5.0%) were common risk factors. Most of those with CNS infections (n=19; 63.3%), perinatal antecedents (n=23; 76.7%) and other acquired risk factors (n=27; 90.0%) presented with epilepsy due to structural and metabolic causes . Perinatal events were the putative aetiology for nearly 40.7% of generalized epilepsies due to structural and metabolic causes and 28.2% of all epilepsies with onset < 10 years.

Significance: Existing classifications schemes should be better suited to field conditions in resource-limited communities in low- and middle-income countries. The finding of drug resistant epilepsy in nearly at least a third in a community-based sample underscores an unmet need for enhancing services for this segment within healthcare systems. Perinatal events, CNS infections and head injury account for a third of all epilepsies and hence, preventative interventions focusing on these epilepsy risk factors should be stepped up.

The Virus Moved Female Faculty to the Brink. Will Universities Help?

Article, originally published in the New York Times

The pandemic is a new setback for women in academia who already faced obstacles on the path to advancing their research and careers.

Whatever big plans Lisa Warner had for the year, the pandemic scrambled them. It forced online the biochemistry classes she taught as an assistant professor at Boise State University in Idaho, and it temporarily shut down her laboratory. Her 4-year-old son’s day care closed, and Dr. Warner felt her productivity wane. She feared for her chances of receiving tenure, the long-term job security that most early-career academics ardently pursue, by the 2024 deadline in her contract.

Around the same time, Maria Fernanda Escallón, an assistant professor of anthropology at the University of Oregon and mother to a 3-year-old daughter, was working from a walk-in closet and occasionally a backyard shed to steal quiet moments away from the demands of caregiving. She was trying to write a book, one of many publications she feels she will need to secure tenure.

Late at night, she swapped horror stories of lost time and depleted research over email with other women faculty.

“I hope the administration realizes that anything they do now to alleviate this issue for caregivers will directly impact how the professoriate will look five to 10 years from now — how diverse it will be, and how many women will be in positions of power within academia,” Dr. Escallón said.

Risk-Benefit Assessment of Treatment of Epileptic Women of Childbearing Age With Valproic Acid

Abstract, originally published in Seizure

Aim: Valproic acid (VPA) is a widely used anti-epileptic drug (AED) of demonstrated efficacy. However, its teratogenic effects have resulted in many regulatory agencies recommending that it should not be administered to women of childbearing age unless they are taking contraceptives. The aim of this study was to determine the willingness of candidate patients to change their treatment and to monitor the evolution of their attitude.

Methods: We identified patients aged between 15 and 45 years old who had been diagnosed with epilepsy and were being treated with VPA. A shared decision-making visit was arranged, during which variables related to their epilepsy were recorded. The patients were informed about the teratogenic effects of VPA and the risks/benefits of a change in treatment. The patient, or legal guardian, then freely chose the course of treatment that they wished to follow. On a follow-up visit, six months later, seizure control and tolerance to the chosen treatment were recorded. The variables related to each patient’s willingness to their change treatment were analysed.

Results: A total of 60 patients, with a median age of 32.7 years, were included in the study. Of these, 25 (41.7%) suffered some form of intellectual disability. Only one (1.7%) had poor seizure control. After the initial visit, 41 patients (68%) opted to continue with the VPA treatment, six opted to stop receiving VPA, and 13 decided to switch to another AED. The median age of the patients who opted to change treatment was significantly lower than that of those who opted to continue with the VPA treatment (29.1 vs. 34.4, p = 0.024). The absence of intellectual disability (p = 0.047) and a length of treatment of less than five years (0.016) were both significantly associated with the decision to change treatment. Of the 19 patients who changed treatment, nine (47%) returned to the initial treatment with VPA.

Conclusions: Despite being informed of the teratogenic risk associated with VPA, a significant number of patients and legal guardians opted to continue with this treatment; the reasons given for this were the low possibility of pregnancy and the risk of breakthrough seizures. In almost half the cases studied, the pharmacological alternatives to VPA were poorly tolerated and did not provide a good level of seizure control.

SARS-CoV-2 Pandemic and Epilepsy: The Impact on Emergency Department Attendances for Seizures

Abstract, originally published in Seizure

Introduction: The risk of acquiring SARS-CoV-2 in a hospital setting and the need of reorganizing the Emergency Departments (EDs) to cope with infected patients have led to a reduction of ED attendances for non-infectious acute conditions and to a different management of chronic disorders.

Methods: We performed a retrospective study evaluating the frequency and features of ED attendances for seizures during the lockdown period (March 10th-April 30th 2020) in the University Hospital of Trieste, Italy. We studied the possible pandemic impact on the way patients with seizures sought for medical assistance by comparing the lockdown period to a matched period in 2019 and to a period of identical length preceding the lockdown (January 18th-March 9th 2020).

Results: A striking decrease in total emergency department (ED) attendances was observed during lockdown (4664) compared to the matched control (10424) and to the pre-lockdown (9522) periods. A similar reduction, although to a lesser extent, was detected for seizure attendances to the ED: there were 37 during lockdown and 63 and 44 respectively during the two other periods. Intriguingly, during the lockdown a higher number of patients attended the ED with first seizures (p = 0.013), and more EEGs (p = 0.008) and CT brain scans (p = 0.018) were performed; there was a trend towards more frequent transport to the ED by ambulance (p = 0.061) in the lockdown period.

Conclusions: Our data suggest that the pandemic has affected the way patients with seizures access the Health Care System.

Researchers Develop Wearable Device for Predicting Epileptic Seizures

Article, originally posted on MedicalXPress.com

Ben-Gurion University of the Negev researchers have developed Epiness, a device for detecting and predicting epileptic seizures based on machine-learning algorithms. The wearable device can generate an advanced warning about an upcoming seizure that will be sent to a smartphone up to an hour prior to its onset. The system was out-licensed for further development and commercialization to NeuroHelp, a startup company that was recently founded by BGN Technologies, the technology transfer company of BGU and Dr. Oren Shriki, of BGU’s Department of Cognitive and Brain Sciences and NeuroHelp’s scientific founder.

Epiness is a seizure prediction and detection device that is based on a new, ground-breaking combination of EEG-based monitoring of brain activity together with proprietary machine-learning algorithms. The device combines a wearable EEG device with state-of-the-art software that minimizes the number of necessary EEG electrodes and optimizes electrode placement on the scalp. The sophisticated machine-learning algorithms are designed to filter noise that is not related to brain activity, extract informative measures of the underlying brain dynamics, and distinguish between brain activity before an expected epileptic seizure and brain activity when a seizure is not expected to occur.

Study Reveals Seizures During Menstrual Cycle Linked to Drug-Resistant Epilepsy

Summary, originally posted on EurekAlert

More frequent seizures during the menstrual cycle in women with genetic generalized epilepsy have been linked for the first time to drug-resistant epilepsy when anti-seizure medications don’t work, according to a study published in the journal Neurology.

Women with a form of genetic generalized epilepsy called catamenial epilepsy – when seizure frequency increases during their menstrual cycle – were nearly four times more likely to have drug-resistant epilepsy than women who experience no changes in frequency. In generalized epilepsy, seizures begin on both sides of the brain at the same time, while focal seizures start in only one part of the brain.

“Typically, genetic generalized epilepsy is thought to respond better to anti-seizure medications than focal epilepsy. However, previous studies suggest a minority of individuals, between 18 and 36%, with genetic generalized epilepsy, do not respond well to these medications,” said senior author Gary A. Heiman, an associate professor in the Department of Genetics in the School of Arts and Sciences at Rutgers University – New Brunswick. “It is unclear why seizures in these individuals do not respond well, and we sought to investigate why. We found a surprising association between women’s menstrual cycle and these with drug-resistant genetic generalized epilepsy. Understanding the reasons for this association could lead to alternative, personalized treatment options for at least some patients.”

Fetal Alcohol Spectrum Disorder Linked to High Prevalence of Epilepsy

Summary, originally posted in Science Daily

Fetal alcohol spectrum disorder (FASD) refers to a range of negative developmental outcomes that result from maternal drinking during pregnancy. Children with FASD can suffer from many problems, including epilepsy, and a new study has found a much higher prevalence of epilepsy or history of seizures in individuals with FASD.

For this study, researchers examined the histories of 425 individuals (254 males, 171 females), between the ages of two and 49 years, from two FASD clinics. Relationships between a confirmed FASD diagnosis and other risk factors — such as exposure to alcohol or other drugs, type of birth, and trauma — were examined for the co-occurrence of epilepsy or a history of seizures.

“This study revealed a much higher prevalence of epilepsy and seizure history in individuals with a diagnosis of FASD,” said Stephanie H. Bell, a researcher with the Centre for Neuroscience Studies at Queens University and corresponding author for the study. “In the general population, less than one percent are expected to develop epilepsy; of those with FASD, six percent had epilepsy and 12 percent had one or more seizures in their life. Subjects were more likely to have epilepsy, or a history of seizures, if exposure to alcohol had occurred in the first trimester or throughout the entire pregnancy.”

“While this report supports a growing impression that fetal alcohol exposure may predispose the immature brain to the development of epilepsy, the results do not establish a direct cause-effect relationship between FASD and epilepsy,” cautioned Dan Savage, a professor of neuroscience at the University of New Mexico who was not involved in the study. “Establishing a direct link between these clinical conditions will be a difficult challenge given our incomplete understanding of how alcohol damages the developing brain and what neuropathological changes in brain tissue lead to the development of different types of epilepsy.”

Nonetheless, Savage added that it is clear that alcohol can damage the fetal brain. “The extent to which this damage leads to adverse neurobehavioral consequences likely depends upon many factors, including the amount and patterns of drinking during pregnancy, the presence of other pregnancy risk factors, such as cigarette smoking, substance abuse, or poor prenatal care, and the presence of other diseases affecting a mother’s health, such as diabetes or high blood pressure,” he said. “As risk factors accumulate, the risk of adverse neurodevelopmental outcomes also increases.”

“This report builds on a growing body of evidence that maternal drinking during pregnancy may put a child at greater risk for an even wider variety of neurologic and behavioral health problems than we had appreciated before,” said Savage. “The consensus recommendation of scientists and clinical investigators, along with public health officials around the world, is very clear — a woman should avoid drinking during pregnancy as part of an overall program of good prenatal care that includes good nutrition, adequate exercise, sufficient rest, and proper prenatal health care.”

A little girl dressed in a white lab coat holding a beaker of cool green liquid.

CURE Update: Activities for Social Distancing

Greetings, CURE community! There is one question on our minds right now: how are you? While we are closely monitoring the COVID-19 pandemic, we want to hear from you about how you’re passing the time, your concerns about epilepsy management, or what information you need. Reach out to our CEO Beth Lewin Dean at CEO@www.cureepilepsy.org.

Please know that CURE is here, continuing to fight to cure epilepsy and providing news and resources. In this update, find resources and ways that you can get involved while maintaining CDC-recommended social distancing:

COVID-19 and Epilepsy Facebook Live Stream

COVID-19 Facebook Live StreamWatch and Share

On March 18, three experts answered audience question about COVID-19 and epilepsy on Facebook Live. During this live stream, pediatric epileptologist Dr. Douglas Nordli from UChicago Medicine along with neurologist Dr. Jeffrey Loeb and neuroimmunologist Dr. Michael Carrithers, both from the University of Illinois at Chicago, provided their expert insights.

Stay tuned: We will continue to host live online discussions as the situation develops.

Scholarship Deadline: April 15

CURE Scholarship DeadlineLearn More

The deadline to apply for an Education Enrichment Fund (EEF) scholarship of up to $5,000 is April 15. If you or a loved one are impacted by epilepsy and committed to becoming an agent of change in the epilepsy community, we encourage you to apply!

EEF scholarships support coursework in scholars’ chosen career paths, so they can use their knowledge and skills to affect positive change within the epilepsy community. Check our website for full eligibility and application details.

EEF scholarships are made possible by the generous support of Greenwich Biosciences.

Webinar and Live Q&A: The Epilepsy-Autism Connection

Epilepsy and Autism WebinarRegister

Join us for a webinar exploring the link between epilepsy and autism Tuesday, April 28 at 12:00PM CT. Dr. Jamie Capal will dive into leading theories on why these conditions are so frequently connected, discuss common seizure types, and explore how to identify seizures in children and the next steps to take.

Our Leaders in Epilepsy Research Webinar Series is made possible by the generous support of the BAND Foundation.

#CUREkids: Build Your Epilepsy Research Lab!

Mary Fox's Granddaughter, YasyaDownload Coloring Page

The world needs junior investigators to help find a cure for epilepsy…and the #CUREkids are perfect for the job! Have your little one draw, paint, or build their epilepsy research laboratory. Snap a picture to show the CURE Community using #CUREkids on Instagram and Twitter!

CURE Champion Spotlight: Mary Fox Goes the Distance

Mary Fox's Granddaughter, YasyaLearn More

For her 75th birthday, CURE Champion Mary Fox and her friends and family walked, skipped, and swam to support epilepsy research during Move for Yasya! This virtual marathon was a special fundraiser honoring Mary’s granddaughter, Yasya, who has battled epilepsy for two years.

Mary had an ambitious fundraising goal – $1,945 in honor of her birth year. In just one month, this innovative virtual event raised 120% of the goal in support of CURE’s mission to fund ground-breaking epilepsy research!

New from Seizing Life®, a CURE Podcast

Seizing LifeListen or Watch

Catch up on the latest episodes of the Seizing Life podcast where we discuss:

  • How genetic research is directly benefiting epilepsy treatment. Listen or Watch
  • The ways EEGs are used to diagnose, treat, and research epilepsy. Listen or Watch

CURE Champion Spotlight: Mary Fox Goes the Distance

For her 75th birthday, CURE Champion Mary Fox and her friends and family walked, skipped, and swam to support epilepsy research during Move for Yasya! More than just an impressive milestone, this virtual marathon was a special fundraiser honoring Mary’s granddaughter, Yasya.

Yasya, standing in the kitchen wearing a fox costume.

Yasya, who this fantastic event honored.

Yasya has battled epilepsy for two years now. At only 12 years old, she has had multiple emergency room visits, has undergone innumerable diagnostic tests, and has tried countless antiseizure drugs.  Yasya has always referred to herself as “rare” and unfortunately, her neurologist agrees; her epilepsy is rare and complicated with multiple seizure types over her entire brain. Despite these seizures, Yasya wakes up every day with a cheerful, outgoing attitude. She doesn’t let her epilepsy stop her – she uses it to motivate and empower her to live her life to the fullest.

Yasya’s spirit of positivity and can-do attitude inspired Mary and her husband Jay – they decided to host their own virtual marathon for Mary’s birthday! They committed to walking 26.2 miles over 26.2 days and encouraged friends and family to join them using the power of the internet. Using CURE’s online fundraising platform, each participant donated to CURE, committed their own distance and time goals, and decided how they’d get up and move (walk to the park once a week, do 20 laps around the kitchen table every night, etc.). Participants then honored their marathon commitments and remained engaged by providing updates and encouragement through Mary’s interactive fundraising page. Mary’s interactive fundraising page.

Mary had an ambitious fundraising goal – $1,945 in honor of her birth year. In just one month, Move for Yasya raised 120% of Mary’s goal, all in support of CURE’s mission to fund ground-breaking epilepsy research.

Mary hopes to create a world without epilepsy for Yasya and the 470,000 other children in the US impacted by this devastating condition by raising funds and awareness in support of epilepsy research. If you’re interested in setting up your own virtual fundraiser, please reach out to our Outreach Team at events@www.cureepilepsy.org.

What My Epilepsy Diagnosis Taught Me About Pursuing a Career in Science

Six months after starting my first faculty position, I lost consciousness while speaking with my students and postdocs. I hit my head on a lab bench as I fell to the floor. A few minutes later, utterly bewildered, I woke up to see the unfamiliar faces of the emergency medical team, as well as the scared faces of my mentees. At the hospital, doctors performed a battery of tests, collecting my spinal fluid and scanning my brain. Later, they told me that I’d suffered a grand mal seizure; it was the first seizure I’d ever had. I was diagnosed with epilepsy at 34 years of age—and my career hasn’t been the same ever since.

When I had my first seizure, I’d toiled in academia for 14 years, working my way up the academic ladder. I’d always been laser focused on the next step in what I imagined would be a very linear career trajectory—Ph.D., postdoc, faculty job, tenure. Then, less than 1 year after starting my dream job as a tenure-track professor, health complications disrupted my path.

I decided not to read much about epilepsy. Learning about my condition would be a distraction from my own research. I also wanted to show my trainees and colleagues that all was well. I was on medication, after all, so there was no reason to worry. I thought I could get away with making minimal lifestyle changes—more sleep, no driving—and leave it at that.

For 1 year it worked, and life went on as normal. But then, out of nowhere, I started to have recurrent seizures. I fell in my department’s bathroom, where a graduate student found me. I had a seizure while traveling home from a lecture in Europe. I had several seizures in front of my 3-year-old daughter at home, where I awoke to see her staring at me and crying.

It’s hard to describe the feeling of having a seizure, of coming back to reality and finding yourself confused, lost, and completely vulnerable. I had to take higher doses of my medication, which caused side effects such as fatigue, anxiety, and hostility. The fatigue reduced my focus, at times preventing me from writing grants or even reading papers. Leading my research team became a challenge. Often I was physically unable to stay in the lab for long hours, and mentally unable to focus during meetings with my trainees. Every seizure took my confidence in my ability to run a lab down a notch.

Yet, thanks to an amazing group of trainees and collaborators, my lab remained productive and well-funded. My epilepsy became a challenge we all face together. My trainees now understand that sometimes I won’t be in the lab, possibly for a prolonged period. But we stay in constant touch through email and phone calls. I know I can count on them to keep the lab running in my absence. They know I have faith in them and that I am available when they need me.

I am still afraid. Afraid of what’s next. Afraid of having a seizure during a conference talk. Afraid of traveling. Afraid of forgetting people’s names. Afraid of forgetting deadlines. Afraid of not looking forward to the next step in my career path.

It’s difficult. But I’ve also started to realize that most people outside the orderly world of academia deal with similar fears about the future every day. I’ve learned that it’s OK to give myself some slack—to deviate from the linear career path I once imagined I was on. I work fewer hours. I have to take more notes to avoid forgetting things. I am less efficient. I am still afraid. But that doesn’t stop me from traveling, giving talks, and writing grants and papers. After every seizure, I still think of quitting. But I don’t. I adapt.

So, if something unexpected derails your ideal career path, find an alternate route. Accept that you have to do things differently. Don’t be afraid to ask for help, and don’t compare yourself with others. Surround yourself with positive people and learn how to carry on. Linear or not, a career in the sciences is still an amazing privilege that no seizure will erase.