Exploring the Experiences of Self-Determination of Individuals with Mild Intellectual Disabilities and Epilepsy

Abstract found on PubMed

Background: While epilepsy can decrease quality of life and self-determination in individuals without intellectual disabilities, the impact of epilepsy on experienced self-determination in people with intellectual disabilities remains unclear.

Method: We conducted semi-structured interviews with six adults (four men, two women) aged 30-61 with mild intellectual disabilities and drug-resistant epilepsy to investigate their experiences of self-determination. The data were analysed using Interpretative Phenomenological Analysis.

Results: Three main themes were identified: (A) I am a competent person with epilepsy; (B) My social needs: being accepted as I am and stability in relationships; and (C) Being in control.

Conclusions: In this study, the impact of epilepsy on experienced self-determination of people with mild intellectual disabilities outweighs the influence of intellectual disabilities. Identity formation, friendships with peers, and autonomy support in risk management are identified as important topics in supporting this group.

Eating Disorders Occur at High Rates in Adolescents with Epilepsy and are Associated with Psychiatric Comorbidities and Suicidality

Abstract found on PubMed

Objectives: To assess the occurrence rate, characteristics, and impact of eating disorders (EDs) in adolescents with epilepsy.

Methods: In this observational study, adolescents with epilepsy seen in a single center between 2013-2022 who had comorbid EDs were compared to two control groups of adolescents with only epilepsy and only EDs. Patients with intellectual disability or autism spectrum disorder were excluded. Data retrieved included demographic and anthropometric details and clinical variables relating to seizure types, EDs, and psychiatric disorders and behaviors.

Results: A total of 376 subjects were included in the study: 84 adolescents with both epilepsy and eating disorders, 135 with only epilepsy, and 157 with only EDs. The rate of EDs in adolescents with epilepsy was 7.0% (95% CI 5.6-8.5%) overall, 11.3% (95% CI 8.8-14.3%) in females, and 3.1% (95% CI 1.9-4.8%) in males. The median (IQR) time difference between the onset of epilepsy to an ED was 1.6 (0.5-3.6) years. Among adolescents with epilepsy, those with an ED were more likely to be females (p=0.001) and have a lower zBMI percentile (p<0.001). Epilepsy type, seizure frequency, or seizure duration were not specific for having or not having EDs. Amongst adolescents with EDs, those with epilepsy had a younger onset of their EDs (p<0.001), included relatively more males (p=0.007), and consisted of more cases of anorexia-nervosa-restrictive type (p<0.001), and fewer cases of bulimia nervosa (p=0.04) and binge eating disorder (p=0.003). Adolescents with epilepsy and a comorbid ED were more likely to have psychiatric comorbidities such as depression, anxiety, and suicidality than adolescents with only epilepsy or EDs.

Significance: EDs should be suspected and screened for in intellectually intact female and male adolescents with epilepsy, irrespective of their epilepsy type. If disturbed eating behaviors or EDs are identified, further evaluation should be directed at detecting other psychopathologies, including suicidality.

Slight Association Identified Between Cerebral Microbleeds and Acute Symptomatic Seizures 

Article published by AJMC

Findings from a retrospective study of hospitalized patients with anterior circulation ischemic stroke showed an association between cerebral microbleeds (CMBs) and acute symptomatic seizures (ASS). However, this connection was attenuated after accounting for multiple different covariates.

The study is published in Epilepsy & Behavior.

“The presence of CMB alone would be insufficient to explain the onset of seizures after stroke as this is a gradual process, reflecting the prolonged effects of stroke risk factors on cerebral small vessels,” lead author Alain Z. Looti, MD, MS, assistant professor, Penn State Neuroscience Institute, and colleagues, wrote. “The presence of cerebral microbleeds may thus indicate a patient with greater risk factors for stroke and thus more likely to have a more severe stroke. Stroke severity, which is associated with an increased risk of seizures, could therefore potentially mediate the relationship between CMB and seizures.”

Among a cohort of 381 participants, 17 (4.4%) patients had seizures during hospitalization after the index stroke. On an univariable analysis, the presence of 4 or more CMBs (odds ratio [OR], 3.84; 95% CI, 1.16-12.71) and stroke etiologies were associated with ASS. After adjusting for confounders such as stroke severity, cortical infarct location, and hemorrhagic transformation, the association between CMBs and ASS was reduced (adjusted OR, 3.11; 95% CI, 0.74-11.03; P = .09).

In this single center study, multivariable logistic regression analysis showed that patients with a stroke of undetermined cause were found to be more likely to have ASS (adjusted OR, 5.09; 95% CI, 1.17-35.25; P = .05). A summary of ASS characteristics revealed that time to seizure after stroke was less than 1 day in 71% of the cases, 47% of the ASS were focal, status epilepticus was observed in 6%, and most patients had started on levetiracetam. In causal mediation analysis, findings showed that the effect of CMB on ASS was not mediated by stroke severity.

Older Patients with Epilepsy Should be Monitored for Hyponatremia, Study Finds

Article published by AJMC


As a large population of patients with epilepsy ages, risk of hyponatremia has become an important clinical concern, in which monitoring of serum sodium levels when receiving antiseizure medications or antipsychotics (ASMs) may help identify and minimize the risk of hyponatremia in patients with epilepsy.


“Although hyponatremia is a frequent problem associated with epilepsy, to our knowledge, the number of cases and annual incidence rates have not been previously reported,” wrote the researchers of the study. “In our cohort, during the 15-year study period, the overall incidence remained unchanged in pediatric and adult patients but increased significantly in older adult patients.”


The retrospective cohort study is published in Heliyon Open Access.


The study enrolled a total of 26,179 patients with serum sodium levels measured between January 2006 and December 2020, and included 14,620 patients who were enrolled in a previous study between January 2006 to December 2017.


The researchers obtained patient information, including age, sex, body weight, clinical symptoms, concomitant ASM treatment, ASM dose and concentration, and other laboratory information. Furthermore, serum sodium level was measured multiple times in most patients and used the lowest sodium level for patients with a changed ASM regimen during the study period. Moderate-to-severe hyponatremia was defined as serum sodium levels less than 130 mEq/L.


Patients were grouped by age: 0-15 years (n=8598), 16-64 years (n=16,476), and 65 years and older (n=1105), in which the researchers measured potential risk factors, the incidence rate between patients with and without hyponatremia, factors with a significant influence on developing hyponatremia, and performed a logistic regression analysis and multiple logistic regression analysis to calculate the crude odds ratio and adjusted odds ratios.


The analysis revealed that between 2006 to 2020, 677 (2.6%) patients developed moderate-to-severe hyponatremia, with an incidence of 3.1 per 1000 person-years (95% CI, 2.2-3.9) in the pediatric group, 19.8 per 1000 person-years (95% CI, 18.7-20.9) in the adult group, and 50.4 per 1000 person-years (95% CI, 43.3-57.5) in the older adult group.

CURE Epilepsy Update August 2023

Greetings Epilepsy Community,

We as a collective are painfully aware of how little the general public knows about epilepsy and how the lack of discourse about the disorder likely contributes to epilepsy research being underfunded by the government relative to other neurological conditions. One of the ways to tackle this problem is to increase awareness of epilepsy, seizures, and the impact upon individuals’ daily lives. By taking epilepsy out of the shadows and talking about it, we raise the profile, increase understanding, and build a sense of urgency around the need for cures. The recent opportunity for CURE Epilepsy to air a public service announcement (PSA) on ESPN this past month during 12 games of The Basketball Tournament is one example of how we can drive awareness. We hope this PSA helped increase understanding of epilepsy and that people exposed will seek to learn more about the condition.

Though TV provides a large audience for our message, there are many ways to increase awareness in our respective communities. Share a Seizing Life® episode with a friend. Wear CURE Epilepsy merchandise out and about. Tell coworkers about a relative’s diagnosis. Suggest seizure first aid training in the PTA meeting. All of these methods of raising awareness might not reach millions like the PSA did, but each step moves us forward toward a world with less stigma against epilepsy and more support for the epilepsy community.

Do you have other creative ideas? We would love to hear from you!

With a commitment to inspire hope and deliver impact.

In this CURE Epilepsy Update, please find information on:

Save the Date for UNITE to CURE Epilepsy 2023

Save the Date for UNITE to CURE Epilepsy 2023! This will be a three-day virtual experience from Wednesday, September 6 through Friday, September 8 culminating in a Day of Giving on the final day, which marks 25 years since CURE Epilepsy’s incorporation date. Stream live educational content, engage with community members, and come together with other CURE Epilepsy advocates to raise funds for critical epilepsy research. Only by joining together will we achieve our vision of a world without epilepsy.

Stay tuned for more information and a registration email landing in your inbox soon!



Watch the CURE Epilepsy PSA that Aired on ESPN

Though yesterday was the final day our PSA aired on ESPN during The Basketball Tournament, you can still watch the video online. The PSA features photos and video footage of 15 people living with epilepsy or who have tragically lost their lives to the disorder. The intent of the thirty-second ad is to highlight the heterogeneity of epilepsy, inspire urgency to advance science, and raise awareness of CURE Epilepsy by showing real people impacted by this common neurological disorder.




Get Your Tickets for Epilepsy Awareness Night at Chicago White Sox Game

Join the CURE Epilepsy community for a very special night at the ballpark: Epilepsy Awareness Night with the Chicago White Sox on Saturday, September 2! Come celebrate CURE Epilepsy’s 25th Anniversary with a specially discounted ticket offer, plus, $5 of each ticket purchased for our selected sections will go towards epilepsy research. See the White Sox in a matchup against the Detroit Tigers, sit with other community members, and raise money for epilepsy


Get Tickets


Become a Sponsor for our Hamilton Unplugged Event in New York

CURE Epilepsy will host Hamilton Unplugged in New York City on October 23 with the longest-running star of Hamilton, Miguel Cervantes, who has performed this role since 2016. This will be an intimate evening of conversation and songs with an exclusive performance from Miguel and his Broadway friends. Sponsorships are available now starting at $2,500 and general admission tickets will be available later this summer.



Become a Sponsor


CURE Epilepsy Discovery: CURE Epilepsy Grantee Makes Strides in the Understanding of Acquired Epilepsies by Investigating Inflammation in the Brain

Status epilepticus (SE) is a medical emergency characterized by unrelenting seizures lasting more than five minutes and that can be associated with negative cognitive impacts, an eventual epilepsy diagnosis, and even death. Dr. Nicholas Varvel’s team found that using a drug to reduce the invasion of monocytes from the blood into the brain minimized the harmful effects of SE, such as a loss in functional impairment and inflammation. This work provides yet another clue to our understanding of acquired epilepsies; with more experiments and evidence, drugs that block monocyte invasion could become a therapy for the prevention and cure of acquired epilepsies.


Read the Discovery



What’s New from the Seizing Life® Podcast

A Teen Uncovers the Emotional Impacts of Childhood Seizures


Hailey Yoon talks about the emotional and psychological impacts that childhood epilepsy may have even years after seizures subside.

Watch or Listen



Comprehensive Epilepsy Centers: An Insider’s Guide


Dr. Dave Clarke, pediatric neurologist, Chief of the Comprehensive Pediatric Epilepsy Program within UT Health Austin Pediatric Neurosciences at Dell Children’s, and board member at the National Association of Epilepsy Centers (NAEC), gives us a thorough overview of the specialists and services available at comprehensive epilepsy centers and offers advice about when and how to access these centers.

Watch or Listen




Watch these and all of our upcoming Seizing Life episodes here.

The CURE Epilepsy Store


Need apparel or accessories to raise epilepsy awareness? Check out the CURE Epilepsy Store!





Shop Now

Please mark your calendar for the following key dates in the epilepsy community:

  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • September 6-8 – UNITE to CURE Epilepsy
  • October 18 – SUDEP Action Day
  • October 31- November 1 – Epilepsy Awareness Day at Disneyland
  • November – Epilepsy Awareness Month
  • December 1-7 – Infantile Spasms Awareness Week


1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.

Read Anu’s Story


Physical Activity in Adults with Epilepsy: Clinical Aspects and Relationship with Cognition and Quality of Life

Abstract found on PubMed

There are several factors associated with lower participation in regular physical activity (PA) in adult patients with epilepsy (PWEs).

Objective: To assess the relationship between the regular practice of PA with clinical and cognitive variables and quality of life (QoL) in PWEs.

Methods: Habitual Physical Activity Questionnaire (HPAQ) was related to clinical variables, scores on the Mini-Mental State Examination (MMSE), on the Brief Cognitive Battery-Edu (BCB-Edu), on the Satisfaction Scale for Physical Activity (SSPA), and on the Quality of Life in Epilepsy Inventory (QOLIE)-31 in 60 PWEs, with a significance level of p<0.05.

Results: The PWEs had a mean age of 42.4±13.6 years, 50% of whom were female. Longer length of epilepsy correlated with lower PA in leisure time (Pearson correlation [r]= -0.276; p-value [p]=0.036). The occupational physical activity scores of the HPAQ correlated positively with perception (r=0.300; p=0.021), memory (r=0.381; p=0.003), semantic verbal fluency test (SVF) (r=0.427; p=0.001), and with the total score in the MMSE (r=0.327; p=0.012). The total HPAQ score correlated with the SVF (r=0.336; p=0.009) and with the MMSE (r=0.254; p=0.049). There was no correlation among the QOLIE-31, the HPAQ, and the SSPA.

Conclusions: Longer duration of epilepsy was associated with the lower practice of PA. Physical activity was associated with better performance in aspects of cognition. There was no relationship between QoL and practice and satisfaction with PA, suggesting different psychosocial aspects involved.

STK-001 Lowers Seizures, Aids Cognition and Behavior, Trials Finding 

Article published by Dravet Syndrome News

Treatment with STK-001 led to a marked reduction in seizure frequency, and aided cognition and behavior, among children and adolescents with Dravet syndrome in early clinical trials, according to new findings announced by the therapy’s developer Stoke Therapeutics. 


“Together these data support the potential for STK-001 to address the underlying cause of Dravet syndrome by treating both seizures and the cognitive and behavioral issues that make this disease so complex and devastating,” Edward M. Kaye, MD, CEO of Stoke, said in a company press release. 


Stoke is conducting two parallel, open-label Phase 1/2a clinical trials of STK-001 in young people with Dravet syndrome: MONARCH (NCT04442295), being run at sites in the U.S., and ADMIRAL (ISRCTN99651026), which is being conducted in the U.K. Both studies mainly are evaluating the safety profile and pharmacological properties of the experimental therapy, with secondary goals looking into its efficacy. 


“Our ongoing studies are providing a better understanding of a dose and dosing regimen that may generate substantial and sustained benefits for patients, while continuing to be generally well tolerated,” Kaye said. 


Most cases of Dravet syndrome are caused by mutations that disrupt the production of the protein NaV1.1. STK-001 is designed to increase NaV1.1 protein production; the therapy is administered via injection into the cerebrospinal fluid (CSF) that surrounds the brain and spinal cord. 


New trial data show that patients experienced a reduction in seizure frequency following treatment with STK-001. 


The most profound reductions were seen among the 11 patients in the ADMIRAL study who were given two or three injections of STK-001 at a high dose of 70 mg. Data from five evaluable patients showed a drop in seizure frequency of 80% at three months after the last dose. At six months after the last dose, seizure frequency was reduced by 89% for the three patients with evaluable data. 

Scientists Uncover New Brain Circuit for Epilepsy 

Article published by SciTechDaily


Researchers from Brigham have traced lesions associated with epilepsy to a shared brain circuit, indicating a unique role that deep brain circuits play in the origin and management of epilepsy. These innovative findings underscore the potential to leverage this specific brain circuit as a directional guide for brain stimulation treatments aimed at managing epilepsy. 


Over 30 million individuals around the globe are affected by focal epilepsy, often linked to brain lesions caused by conditions like stroke. Yet, it remains unclear why certain lesion locations trigger epilepsy while others don’t. A recent study conducted by scientists from the Brigham and Women’s Hospital, a key contributor to the Mass General Brigham healthcare system, discovered a usual brain circuit that might connect diverse lesion locations leading to epilepsy. 


In a paper published in JAMA Neurology, the researchers used a technique called lesion network mapping to identify this brain circuit with findings that point to potential targets for brain stimulation. 


“We’re learning more and more about where in the brain epilepsy comes from and what brain circuits we need to modulate to treat patients with epilepsy,” said lead author Frederic Schaper, MD, Ph.D., an Instructor of Neurology at Harvard Medical School and scientist at the Brigham and Women’s Center for Brain Circuit Therapeutics. “Using a wiring diagram of the human brain, lesion network mapping allows us to look beyond the individual lesion location and map its connected brain circuit.” 


Schaper and the team studied 5 datasets of over 1,500 patients with brain lesions. Participating centers across the US and Europe included the Brigham and Women’s Hospital, Massachusetts General Hospital, Boston Children’s Hospital, Northwestern University, and University Hospitals of Turku in Finland, Maastricht in the Netherlands, and Barcelona in Spain. They studied a variety of brain lesions such as stroke, trauma, and tumors, which allowed them to search for common network connections associated with epilepsy across different regions and types of brain damage. 

Atypical Neurogenesis, Astrogliosis, and Excessive Hilar Interneuron Loss Are Associated with the Development of Post-Traumatic Epilepsy

Featuring the work of CURE Epilepsy PTE Initiative’s Virginia Tech Team


Abstract found on MDPI


Background: Traumatic brain injury (TBI) remains a significant risk factor for post-traumatic epilepsy (PTE). The pathophysiological mechanisms underlying the injury-induced epileptogenesis are under investigation. The dentate gyrus—a structure that is highly susceptible to injury—has been implicated in the evolution of seizure development. Methods: Utilizing the murine unilateral focal control cortical impact (CCI) injury, we evaluated seizure onset using 24/7 EEG video analysis at 2–4 months post-injury. Cellular changes in the dentate gyrus and hilus of the hippocampus were quantified by unbiased stereology and Imaris image analysis to evaluate Prox1-positive cell migration, astrocyte branching, and morphology, as well as neuronal loss at four months post-injury. Isolation of region-specific astrocytes and RNA-Seq were performed to determine differential gene expression in animals that developed post-traumatic epilepsy (PTE+) vs. those animals that did not (PTE-), which may be associated with epileptogenesis. Results: CCI injury resulted in 37% PTE incidence, which increased with injury severity and hippocampal damage. Histological assessments uncovered a significant loss of hilar interneurons that coincided with aberrant migration of Prox1-positive granule cells and reduced astroglial branching in PTE+ compared to PTE- mice. We uniquely identified Cst3 as a PTE+-specific gene signature in astrocytes across all brain regions, which showed increased astroglial expression in the PTE+ hilus. Conclusions: These findings suggest that epileptogenesis may emerge following TBI due to distinct aberrant cellular remodeling events and key molecular changes in the dentate gyrus of the hippocampus.

Identification of Drug Resistance in a Validated Cohort of Incident Epilepsy Patients in the Danish National Patient Register

Abstract found on PubMed


Objective: The main purposes of this study were to validate the epilepsy diagnosis in incident epilepsy cases in the Danish National Patient Registry (DNPR), containing information on nearly 9,000,000 individuals; and identify persons in the validated cohort who fulfilled the International League Against Epilepsy (ILAE) criteria for drug resistant epilepsy (DRE).


Methods: We reviewed a random sample of medical records from all individuals registered with a first diagnosis of epilepsy (ICD-10: G40) or seizures (ICD-10: G41, R56, or F445) in Central Denmark Region from 2010-2019. In persons with a validated incident epilepsy diagnosis, we determined the proportion with DRE at the latest contact. We performed logistic regression analyses to identify clinical factors that correlated with risk of DRE.


Results: Of 20,723 persons with a first diagnosis of epilepsy (n=11,812) or seizures (n=8,911), we reviewed the medical records of n=1,067 with incident epilepsy and n=610 with incident seizures. Among those with a register diagnosis of epilepsy, the diagnosis was confirmed in 838 cases (45% females, mean age at onset = 42.4 years), providing a positive predictive value (PPV) of 79% (95% CI: 76-81%). The PPV of focal epilepsy was 86% (95% CI: 82-89%), and the PPV of generalized epilepsy was 71% (95% CI: 61-80%). Of 740 patients with confirmed incident epilepsy and ? 1 year of follow-up, 103 (14%) fulfilled the definition of DRE, 476 (64%) were drug responsive, and 161 (22%) had undefined responsiveness. In multivariable logistic regression analysis, early age at epilepsy onset, cognitive impairment, and a history of status epilepticus were associated with DRE.


Significance: In the Danish National Patient Registry, we found a positive predictive value of the epilepsy diagnosis of 79%. Among persons with confirmed epilepsy, 14% fulfilled ILAE criteria of drug resistant epilepsy. Early age at epilepsy onset, cognitive impairment, and a history of status epilepticus were independently associated with drug resistance.