Young Canberra widow speaks out about sudden epilepsy death risk

Young Canberra widow speaks out about sudden epilepsy death risk

Canberra father of two young boys, Harrison Carey, 35, was also a keen BMXer and much-loved husband when he died suddenly from epilepsy last year.

One of the 300 Australians who lose their life to epilepsy each year, Harrison died from Sudden Unexpected Death in Epilepsy (SUDEP), the most frequent cause of death from epilepsy.

“I didn’t know about SUDEP, Harrison didn’t know about SUDEP,” says his widow, Charley Carey, 37. “It’s not something people talk about, if we had known, we might have done things differently. We went to all his specialist appointments, and no one ever mentioned SUDEP.”

SUDEP occurs when an otherwise healthy person with epilepsy dies, often in their sleep, and no cause for the death can be found. There may or may not have been a seizure.

“Discussing SUDEP is tough, but the most difficult conversation is the one you don’t get to have. Nothing is more difficult than death. If I can raise awareness, even if it just stops one family going through this, then that’s what I have to do,” Charley says.

Charley and Harrison met when her youngest son Madden was just three months old, and Kaidyn was 19 months old. Harrison fast became a father to the little ones he proudly called “his boys”, introducing them to BMX.

According to Epilepsy ACT, more than 8,000 ACT residents live with epilepsy, and the annual incidence of SUDEP is about one in 1,000 adults with epilepsy and one in 4,500 children with epilepsy.

SUDEP risk factors include: uncontrolled or frequent seizures; tonic-clonic seizures, particularly if these happen at night or during sleep; frequent seizure activity; seizures that begin at a young age; many years of living with epilepsy; missing doses of medication; and drinking alcohol.

“The exact cause of SUDEP is not yet understood, but there are things we can do to manage the risk of SUDEP like taking your medication as prescribed and on time,” says Fiona Allardyce, CEO of Epilepsy ACT.

“Knowing your seizure triggers is important so that you can avoiding them as much as possible. Triggers are different for everyone and can be anything from a certain smell, to flickering lights, stress, or not getting enough sleep. Avoid drinking too much and illicit drugs. Ask your doctor about your risks, and make sure your family and caregivers are trained in seizure first aid,” Fiona says.

Epilepsy ACT encourages family members and people with epilepsy to get seizure first aid training for free in their Understanding and Managing Epilepsy and Administration of Emergency Medication courses. Both courses can be completed in just two hours.

Charley, Madden and Kaidyn continue to visit Harrison’s favorite spot, taking him Maltesers and diet colas on special occasions.

“I don’t want to forget my husband. I want to honor him. He was in the prime of his life with so much to look forward to,” Charley says.





Veterinarian and neurologist Sonja Bröer, together with her colleagues, has investigated the potential of regenerative cell treatments with the intention of either curing epilepsy or making its symptoms much less severe. Before joining the faculty at Berlin’s Freie Universität, Bröer oversaw the preclinical research team of San Francisco’s Neurona Therapeutics, Inc.

The company is working on a cell therapy (NRTX-1001) for seizures that don’t respond to drugs treatments. They have now released the results of preliminary tests in the journal Cell Stem Cell.

It’s estimated that epilepsy affects 50 million individuals globally. Disturbingly, a significant fraction, nearly a third, find that their seizures remain unresponsive to traditional drug therapies.

One of the pivotal neurotransmitters, gamma-aminobutyric acid (GABA), plays a role in curtailing this hyperactivity. Nonetheless, in epilepsy sufferers, the specific neurons producing GABA can deteriorate, leading to an imbalance between excitatory and inhibitory signals. This imbalance is considered a primary driver for epileptic episodes.

The ground-breaking research presented in Cell Stem Cell by Dr. Bröer and her team details a promising approach. They’ve pioneered the transplantation of inhibitory neurons, which release GABA, aiming to reestablish the brain’s equilibrium and thereby curtail epileptic activities. Such cellular therapeutic approaches hold immense promise as an alternative for those grappling with drug-resistant seizures.

Further emphasizing its potential, NRTX-1001, formulated by Neurona Therapeutics, is based on human embryonic stem cells, which are then transformed into inhibitory neurons. When tested on a mouse model mimicking chronic epilepsy, the results were astounding. Most subjects displayed profound seizure suppression, with a significant proportion experiencing complete cessation of seizures.

Beyond mere integration, these introduced neurons spread widely in the brain and seamlessly merged with the existing neural network. Not only did they exhibit long-term survival, but they also minimized epilepsy’s detrimental effects, such as brain scarring – an affliction also observed in human patients.

This therapeutic approach’s impact was found to be dose-responsive and was devoid of any detrimental side effects. Encouragingly, this propels the current phase 1/2 clinical trial (NCT05135091) focusing on drug-resistant epilepsy.

If it garners approval, it will position itself as a pioneering cell therapy for epilepsy on a global scale, potentially revolutionizing the lives of countless individuals facing treatment-resistant seizures.


Source:, Puja Molpariya

Building a new future for people with epilepsy

Building a new future for people with epilepsy

It’s time to embrace the entrepreneurial spirit of charity.

Charity has always begun at home, but today we rely more heavily than ever on old cardigans and jackets to play their part in funding scientific discovery, hopefully leading to medical breakthroughs.

In 2019, charities in the UK funded £1.9bn in research and development. That was the equivalent of the combined efforts of the Medical Research Council and the National Institute for Health and Care Research.

Epilepsy affects 626,000 people in the UK. That is 1 in 100 people. One third of them – 200,000 – live with uncontrolled seizures as their epilepsy fails to respond to current treatment options. Yet just 0.3 per cent of government funding for medical research is invested in epilepsy.

But the number of old skirts that we can dig out and cakes that we can bake is finite. It is time to think big, think bold and embrace the entrepreneurial spirit that forms the backbone of charity.

I never envisaged the day I would consider building on green belt land. As for many of us, the countryside is in my DNA. It is where the concrete stops and the woodpecker begins. But this is a far cry from the reality of a deepening housing shortage, people living with chronic conditions and a green belt that increasingly can only be accessed by the well-off. Few buses or trains swing by the countryside for a picnic, and even fewer come back later that day.

We have an enviable legacy at the Epilepsy Society – 300 acres of land, much of it green belt – though not the verdant rolling hills the phrase may conjure up. It is a Victorian legacy from the days when our founders invested in land to provide employment for people with epilepsy whose trajectory in the cities would otherwise lead to the workhouse and asylums. A farm in the country offered new life, new hope and a future where there had been none.

But people with epilepsy no longer farm the land. Those with controlled seizures now live fulfilled lives, working in offices and laboratories, running their own businesses, teaching and working for constituents in parliament. For the 200,000-plus people whose seizures don’t respond to medication, they don’t need farmland, they need research that will accelerate the field of discovery leading to better diagnosis, better treatment and better jobs.

We want to turn our legacy land into a true legacy for people with epilepsy, and research that will lead to more personalized treatments. Not a buzz word but an achievable goal in a field where treatment today, of necessity, relies too much on trial and error. New and better treatments are within our grasp – subject only to research funding.

Government often works in silos. In one department there is a housing crisis with a crippling shortage of affordable homes. In another there is scientific expertise and genomic data but not the funding to turn it into better diagnosis and treatment for people with epilepsy.

Here, in a corner of Buckinghamshire, we have a potential solution to both: 300 acres of land, part of which could make a big dent in the housing shortage, including homes for young people who want to continue to live in the community where they grew up. Those homes could fund groundbreaking, innovative research that could transform lives across the UK and ultimately the world.

And it’s important to say that quite a lot of green belt land is not beautiful landscapes. On our site we have tumbledown buildings we can no longer maintain. If anyone believes these are more beautiful than a flat that is fully accessible for a wheelchair user, or an affordable house with a small garden and swing for the family of a care worker, that seems to me to be a failure of imagination and empathy.

I have lost count of the number of commentators who say that charities should “stick to their knitting” and “honor the wishes of their donors”. Well, this is our knitting. Every penny raised will go to research to benefit people with epilepsy. And that is what the land was given to us for.

We could be using our legacy land to enable new fathers with epilepsy to hold their babies safely without anxiety about a seizure; for parents to wave their child off to university without sleepless nights; and for everyone with epilepsy to be able to lead a full life and plan a family without fear of terrifying seizures or that the drugs they take will cause disabilities in their unborn child.

We are hoping to build 1,000 homes on 40 per cent of our land. It could help solve the housing crisis locally. Nationally, it will bring personalized medicine closer to more people with epilepsy. Just imagine the difference if we could offer a newly diagnosed teenager medication to control their seizures within weeks rather than years.

We have all found a certain magic hidden within our own wardrobes that is helping to fund the hopes and dreams of others. Now we need to look beyond those second-hand clothes to take funding for innovation and life transforming science to a new level.


Source:, Clare Pelham

King’s College London Identifies Impulsivity-Linked Genes In Epilepsy

King’s College London Identifies Impulsivity-Linked Genes In Epilepsy


The new study, published in Nature Genomic Medicine, analyzed DNA from individuals with Juvenile Myoclonic Epilepsy. It is the first to screen for and identify genetic variants associated with impulsivity in a neuropsychiatric disorder.

Juvenile Myoclonic Epilepsy is a common type of epilepsy characterized by several types of seizures starting in adolescence. This type of epilepsy can be difficult to treat due to resistance or intolerance to antiseizure medication, which is seen in about 50% of women with JME. There is therefore a need to improve treatment options in JME.

The study examined 376 samples collected through the BIOJUME (Biology of Juvenile Myoclonic Epilepsy) consortium across 10 countries. Individuals self-reported elevated impulsivity, a behavioral trait demonstrated by poor planning, risky, or inappropriate behaviors that can result in undesirable consequences.

Impulsivity has previously been linked to JME as well as attention-deficit hyperactive disorder (ADHD) and bipolar disorder. In JME specifically, impulsivity has also been associated with an increased frequency of seizures.

Genome-wide screening identified SLCO5A1 as a main gene associated to impulsivity. This gene has not been studied extensively in relation to either impulsivity or epilepsy. However, knockout of the equivalent gene in fruit flies results in seizure-like events and overactivity in the organism.

Researchers found that SLCO5A1 interacts with other genes that are responsible for “synapse assembly”, a crucial process for neurons to form connections with each other. Alterations in this process has been linked to epilepsy and other neurodevelopmental disorders.

This discovery gave promising evidence to assess impulsivity in neuropsychiatric disorders. It also uncovered the link between impulse control and seizure control, which may have implications for new treatments.

We believe that this finding indicates that assessing impulsivity in individuals with Juvenile Myoclonic Epilepsy may improve clinical assessments and treatment selections. This is an important step towards personalized medicine in neuropsychiatry.


Source:, Professor Deb Pal

Experimental Drug Could Rein in Epilepsy Seizures

Experimental Drug Could Rein in Epilepsy Seizures

For people with tough-to-treat epilepsy, seizures can be both frightening and dangerous, but a new experimental pill may bring significant relief to over one-third of them.

Dubbed XEN1101, the new drug reduced the frequency of seizures by more than 50%, or even eliminated them, in some patients with focal epilepsy who did not respond to an average of six other drugs.

“I am predicting that with this drug there are going to be far fewer people with epilepsy who are going to be walking around and have no chance of getting their seizures controlled,” said lead researcher Dr. Jacqueline French, a professor of neurology at NYU Langone Health in New York City.

Focal epilepsy is the most common type of epilepsy, French noted. “Two-thirds of people with epilepsy have focal epilepsy, which means that there’s one area of focus in the brain where the seizures begin, whether it be in the temporal lobe or the frontal lobe, or wherever it is.”

XEN1101 works differently than most other drugs used to treat epilepsy, she added.

“The drugs we use have different ways of decreasing the excitability of the brain. The most common drugs that we have are what we call sodium channel blockers. They prevent sodium from going into a cell,” French said.

When sodium rushes into a cell, it fires the cell and sends that signal to the next cell, which sends it to the next cell and so on. “Most of the drugs we have blocked that,” French explained

However, XEN1101 is a potassium channel opener, which means that it lets potassium out of the cell instead of keeping the sodium from going into the cell, which signals the cell not to fire, she said.

Like any drug, there are side effects. It can make people sleepy and it can make people unsteady. These side effects depend on the dose and are manageable, French said.

Another benefit of the drug is that it lasts in the body for a relatively long time, which means that patients don’t have to take it as often as other anti-seizure medications, she noted. And unlike current medications that can take as long as 10 weeks to become fully effective, XEN1101 begins to act right away.

For the study, funded by drug maker Xenon Pharmaceuticals Inc., French and her colleagues randomly assigned 285 men and women with focal seizures to one of three doses of XEN1101, or a placebo. Participants had failed other drugs and had at least four seizures a month.

The investigators found that patients taking XEN1101 experienced a 33% to 53% drop in monthly seizures. Those taking the placebo had an average of only 18% fewer seizures during the eight weeks of the trial.

Given the option to continue taking the drug after the trial ended, most patients opted to continue treatment, and about 18% remained free from seizures after six months and about 11% after a year or more, French said.

More trials of the drug are in the works, and French hopes the drug will be approved and available for patients sometime in the next few years.

“Patients should be hopeful for this drug and others that there is going to be a drug for them that controls their seizures,” she said. “The fact that a seizure can occur anytime, anywhere is so disruptive to people’s lives and it prevents them from working and from having relationships, and it’s dangerous — we need to stop those seizures — yes, they should be hopeful.”

One expert thinks this drug could be a much-needed addition to epilepsy care.

“It was a well-done trial by a group of international physicians, and it brings a new medication to market that has a novel mechanism action, which is quite different from other drugs that are currently available,” said Dr. Sean Hwang, an assistant professor of neurology at Hofstra/Northwell School of Medicine in Hempstead, N.Y.

“I think it’s a nice new medication for patients with seizures and epilepsy,” Hwang said. “For some patients, this could really be a benefit.”


Source:, Healthday, Steven Reinberg

Common myths about epilepsy in kids

Common myths about epilepsy in kids

Epilepsy is one of the more common neurologic disorders in children.

About one in 26 people have epilepsy, and one in 10 people will have at least one seizure in their lifetime.

Mayo Clinic pediatric neurologist and epileptologist Dr Anthony Fine says that even though it’s fairly common in children, there are a few misconceptions when it comes to epilepsy and kids.

Epilepsy can be a challenge to diagnose in children because not all seizures are the same

“It’s really a common misconception that all seizures are convulsive seizures,” he says.

There are other types of seizures, such as absent seizures, where a child may blank out for a few seconds or minutes, then go back to whatever they were doing.

“I’ve had some kids whom, you know, people think they’re acting goofy.

“And this kind of continues, and eventually, it gets picked up that something is actually going on.

“And there are other seizures that look like night terrors almost,” he say.

He notes that for many children, there are treatments to control seizures.

“It’s not a one-size-fits-all kind of deal with epilepsy.

“You really need to tailor it to the patient and their response.

“But for the most part, anti- seizure medications can be very helpful.

“And some children can control their seizures completely.”

Dr Fine says a common misconception is that attention- deficit hyperactivity disorder (ADHD) medications can cause seizures, and children who have epilepsy and ADHD should avoid them.

“It turns out that that’s not true.

“It’s really that there’s just a strong relationship between epilepsy and ADHD.

“And so, if you have one, you’re more likely to have the other.”


Source:, Jason Howland/Mayo Clinic News Network/Tribune News Service

TO YOUR GOOD HEALTH: Seizure-like reactions pose question of epilepsy

TO YOUR GOOD HEALTH: Seizure-like reactions pose question of epilepsy

DEAR DR. ROACH: My husband experienced seizure-like episodes without tonic/clonic body movements in high altitude. These episodes occurred while he was traveling, being physically active in Colorado and skiing in France. Both episodes happened at least 12 hours after physical activity. Our general physician back home felt that these were not true seizures, instead a reaction to possibly being dehydrated in high altitudes.

A vast amount of testing resulted in nothing unusual going on with his cardiovascular system or his brain. But just recently, he had another episode two days after being active, hydrating at sea level and banging his head — with more body movement this time.

I have been researching online, and seizure-like reactions seem to occur due to electrolyte imbalances. It is very hard to get to a neurologist without an excessive wait time. Do you think anti-seizure medications are warranted? — S.S.

ANSWER: It’s important to separate a seizure (which anyone can get if there is enough stress to the brain) from epilepsy, a condition where the person is susceptible to recurring seizures. For it to be considered epilepsy, a person generally needs at least two unprovoked seizures (with no unusual stress to the brain) at least 24 hours apart. Only epilepsy is treated with long-term anti-seizure medicines.

There is indeed a risk of developing seizures while at a high altitude. In addition, there are many other conditions that can provoke a seizure. You mentioned electrolyte imbalance, but sodium (too much or too little) as well as too little amounts of magnesium and calcium are among the most common. Low blood sugar is a frequent cause.

Some recreational drugs cause seizures, but withdrawal from drugs, especially alcohol, is more common. Metabolic diseases of the kidney and thyroid are also common. Sleep deprivation, brain injury (especially stroke, but also trauma), brain tumors and brain infections are all common triggers that your husband probably received an evaluation for.

Had it only been the first seizure, my advice likely would have been the same as your physician’s, although I probably would have suggested a consultation with an epileptologist (a neurologist with special expertise in seizures). Now that he has had a second — and unprovoked — seizure, my suspicion that he has epilepsy is much higher. (In hindsight, it’s clear that the first reaction really was a seizure.)

Most people experiencing their first seizure while at a high altitude were eventually found to have epilepsy after further testing, including an electroencephalogram (EEG). The high altitude doesn’t cause the seizure; it just increases the risk of a seizure in a person who has an underlying propensity for it. This may also occur with many medicines, especially those used for depression.

Your husband should see an epileptologist as soon as possible. I strongly feel that it’s unwise for nonexperts to prescribe anti-seizure drugs, except as a treatment until a patient can be seen by an expert. I have seen that done many times, and it is done improperly, at least according to the expert a patient eventually sees. Your husband needs a timely and comprehensive reevaluation. Epileptologists recognize that new onset seizures in an adult require a more timely appointment.


Source:, Dr. Keith Roach

The Frequency and Precipitating Factors for Breakthrough Seizures in Children with Epilepsy.

The Frequency and Precipitating Factors for Breakthrough Seizures in Children with Epilepsy.

To determine the common precipitating factors for breakthrough seizures in children with epilepsy.
This retrospective study reviewed the charts of children with epilepsy who were followed up in the pediatric neurology clinic of King Fahad Hospital in Al-Baha region, Saudi Arabia, between January 2015 and August 2022. Children between 1 to 14 years of age who had epilepsy, as per the International League Against Epilepsy definition and received anti-seizure medication with a seizure-free period of at least 2 months before breakthrough seizure episode, were included in the study.
Of the 108 children included in the study, the mean age was 6.8±1.6 years, and among them (55.5%) were male. Most parents (69.5%) were unaware of the triggering factors of seizure. The majority of patients (88%) reported at least one precipitating factor for breakthrough seizures and the most common one was systemic infection associated with fever (52.8%), and then non-compliance to medications in (34.3%) of the patients. In terms of the electroencephalogram, around 84 patients (77.8%) had abnormal electroencephalogram. Finally, monotherapy was maintained in 63.9% of patients.
We conclude that the most common trigger for breakthrough seizure is a systemic infection associated with fever and non-compliance to anti-seizure medications. Increasing the level of awareness by different methods may help limit or even prevent seizures from occurring. Randomized controlled trials could shed light on the adjustment of anti-seizure medications temporarily by increasing the dosage or giving extra doses during the infection to avoid breakthrough seizures.



7 Exceptional Yoga Poses For Epilepsy Management!

7 Exceptional Yoga Poses For Epilepsy Management!

Numerous people have recognized the benefits of doing yoga daily basis in their routine in the view of fact that Yoga is not just a physical exercise but also a better option for maintaining physical postures, breath control, meditation, and mindfulness. Individuals find a way to promote physical fitness, reduce stress, and enhance mental clarity just by doing yoga.

It provides myriad benefits which are suitable for mental as well as physical health conditions. It is true that it is not a cure for Epilepsy but it can manage the risk of suffering intense conditions of Epilepsy. It is kind of a neurological disorder characterized by recurrent seizures which can easily affect the life of any individual.

In this exploration, I have delved into seven remarkable yoga poses that may help individuals maintaining epilepsy experience relief and better seizure control. You should have to read this article to the end in order to know all the detailed and accurate informative content. Let’s dive into it and find valuable tools to support overall well-being.

Can Yoga Help With Epilepsy?

The potential advantages of yoga for epilepsy might not be commonly recognized. It has been proven that consistent yoga practice offers enduring health benefits. Yoga is very important in our lives. Yoga goes beyond mere physical workouts; the practice of yoga postures (asanas) and controlled breathing techniques has a positive impact on the functioning of the nervous system.

Research indicates that a well-rounded Hatha or Yin Yoga routine can have a calming effect on the nervous system, potentially reducing the likelihood of seizures and even possibly preventing them from becoming severe. Yoga is a kind of physical exercise that also helps in losing weight. Check out, the Noom Diet App Review which is a Psychological Approach to Long-Term Weight Loss.

It’s worth highlighting that consistent and extended engagement in yoga postures, breath control, and meditation could lead to enduring changes in brain function. As an adjunct to medical treatment, yoga for epilepsy emerges as a viable approach to managing the condition.

7 Amazing Yoga Poses to Treat Epilepsy

Here is the list of all those seven amazing yoga poses to calm down brain nerves to a large extent. Take a look at this below-mentioned yoga exercise to do on a daily basis in order to manage the risk of Epilepsy.

Anulom Vilom | Alternate Nostril Breathing

Anulom Vilom is one of the most popular and performed ancient yogic breathing techniques. This simple exercise holds the power of maintaining overall well-being. It involves the rhythmic process of inhaling and exhaling through alternate nostrils.

Some people are also giving online fitness classes but Is Online Fitness the Future of Exercise? Anulom Vilom is not just a popular yoga but also reduces stress, refreshes of mind, and relaxes the nerves of the brain so that it can reduce the risk of Epilepsy.

 Shashankasana (Balasana) | Child’s Pose

Performing Shashankasana embodies relaxation and surrender. You should have to kneel on the floor, sit back on your heels, and then gently fold forward. It will stretch your spine, hips, and thighs. On the other hand, it will provide you with tranquility and relaxation.

Salamba Sarvangasana | Supported Shoulderstand (Against the Wall)

Salamba Sarvangasana is a kind of variation of the classical yoga pose. It will help you improve circulation, and thyroid function, and calm the nervous system. In the way of performing this asana, you should have to lie on their backs with their legs extended upward against a wall for support. Do you know that you can Turn Your Phone Into a Fitness Coach? Here Is Your Pocket Gym!

 Passchimottanasana | Seated Forward Bend

Passchimottanasana also known as a seated forward bend is well known for its proven benefits in improving flexibility, relieving stress, and enhancing digestion by massaging the abdominal organs.  You just have to follow some simple steps like sitting with your legs extended straight and reaching forward to touch the toes or grasp the feet.

 Supta Eka Pada Kapotasana | Sleeping Pigeon Pose

The sleeping Pigeon pose is an asana that offers spinal flexibility and combines deep hip openings. This yoga will reduce your stress, and tension in your mind and relax you from all the things. Through this, the risk of intense Epilepsy will be reduced. Do not miss MrBeast Transformation, Read about What Advice Did He Give?

 Seal  Pose (Yin Yoga)

It is a very popular heart-opening asana performed in the hope of deeply rejuvenating and heart-opening. It offers emotional release and alleviates tension in the upper body. It is a kind of powerful practice for those who are dealing with stress. If you are one of them, then this is highly recommended asanas.

 Garland Pose | Malasana

It is basically a grounding and hip-opening posture. It encourages mindfulness. Garland pose is best for those who are suffering from problems associated with Epilepsy in view of the fact that it provides hip flexibility, and promotes lower back health. So that, the performer can release the stress and tension in his or her mind.


In the crux, Doing yoga in the hope of curing Epilepsy is not possible but it can help you with an epilepsy management plan Which can be a valuable addiction. You will definitely see the results in a short period of time. It may not be a proper treatment but offers potential benefits in terms of stress reduction caused due to Epilepsy and overall well-being.

Thank you for reading this article to the end. I am extremely grateful to you that you find this article worth reading, especially on Trending News Buzz. If you like reading this article then share it with your friends and family members so that you can also read about all the informative content. Your efforts as well as time are extremely appreciated to a large extent. If you want to read more such types of articles like these then stay tuned on trending News Buzz.


Source:, Manya

Neuroplasticity and epilepsy: Why our ever-adapting brain cells are a blessing and sometimes a curse

Neuroplasticity and epilepsy: Why our ever-adapting brain cells are a blessing and sometimes a curse

Brain plasticity is often touted as a miracle cure, but it does have a dark side. Addiction, for example, occurs as a result of neuroplasticity within the brain’s reward system. Now, an animal study by a team of researchers from Stanford University shows that a newly described form of plasticity likely contributes to the progression of epilepsy.

The new study, led by Juliet Knowles, was performed on an inbred strain of rats that grow to develop spontaneous ”absence” seizures (which involve a lapse in consciousness) similar to those in humans.

The results, published in Nature Neuroscience, show that the electrical activity associated with epileptic seizures increased both the proliferation of immature oligodendrocytes and the number of mature oligodendrocytes in the corpus callosum, leading to abnormal overproduction of myelin that in turn promoted the progression of epilepsy.

It is, however, too soon to directly extrapolate the findings to epilepsy in humans. Epilepsy takes various forms in humans, which differ in cause, age of onset, and location and severity of seizures, and so the role of myelin plasticity is also likely to differ between each form. Nevertheless, further investigation of maladaptive myelination may eventually lead to novel strategies for treating epilepsy and other neurological conditions.


Source:, Mo Costandi

Santa Barbara Neuroscience Institute Offers New Surgical Option for Brain Tumor, Epilepsy Treatment

Santa Barbara Neuroscience Institute Offers New Surgical Option for Brain Tumor, Epilepsy Treatment

Cottage Health’s Santa Barbara Neuroscience Institute (SBNI) is the first healthcare provider on the Central Coast to use the latest image-guided laser technology to treat brain tumors, lesions and epilepsy.

The NeuroBlate System delivers Laser Interstitial Thermal Therapy (LITT), a minimally invasive surgical technique using MRI-guided laser light to ablate unhealthy brain tissue.

It can be an effective treatment option for recurrent and hard to reach brain tumors and lesions. It is also used to treat certain types of epilepsy.

“LITT provides patients with difficult-to-access lesions, recurrent brain tumors and epilepsy with an alternative treatment method,” said Dr. Nicole Moayeri, a neurosurgeon affiliated with the Santa Barbara Neuroscience Institute.

“Being the first in the region to offer LITT is a testament to Cottage’s commitment to staying at the forefront of neurosurgery,” she said.

LITT provides the benefits of traditional brain surgery with less risk and a shorter recovery time. Unlike traditional brain surgery, LITT does not require a large opening in the skull.

Because LITT is MRI-guided, the neurosurgeon can visualize the specific area of the brain to be ablated. The precise nature of the procedure helps to lessen the likelihood of harm to nearby healthy brain tissue.

“Because LITT is a minimally invasive surgery, it is generally well tolerated and has a short recovery time,” said Dr. Moayeri. “We are excited to offer LITT as an alternative treatment option for patients who meet the criteria.”

To learn more about LITT and services offered by SBNI, contact nurse navigator Chelsea Brooks, 805-450-8820 or


Resource:, Cristina Cortez

Depriving yourself of sleep can lead to serious health conditions

Depriving yourself of sleep can lead to serious health conditions

There are things you can to to improve the quality of sleep and avoid complications.

As a part of our sleep week coverage, KHOU 11 is taking a look at sleep deprivation in parents and the resources available in Houston to help.

Tanaya Mitchell was just one of many parents who suffered from sleep deprivation.

“We’re supposed to get a woman is supposed to get between eight and 12 hours,” she said. “That is not feasible, especially for a mother who is single and with a full and busy schedule like I had with both of my daughters.”

Mom of two, Tanaya’s case lack of sleep led to the discovery of an epilepsy diagnosis.

I was talking to my girls and I came out of the bathroom and I was communicating with them and my eyes were all in the back of my head and I fainted in front of them,” Mitchell said.

Little sleep triggered her condition.

“So, there’s a lot of health consequences. And even in the acute phase, one or two nights of sleep deprivation can affect you,” Dr. Puneet Patni Pulmonary, critical care and sleep medicine physician, said.

Dr. Patni said that includes increased risk of diabetes, viral infections, cholesterol issues, and cardiovascular troubles.

He works at Kelsey-Seybold sleep center in Houston and can have sleep examined for patients in hotel-style rooms that are comfortable.

“The typical routine is that the patient comes in in the evening and they’ll get some monitors put on them that record airflow or oxygen saturation and body movements and position EEG data,” Dr. Patni said.

Then in a control room next door, medical tech staff look for problems with airflow, respiration, excessive movements or brainwave patterns.

“That data, you know, needs to be reviewed,” Patni said. “So, it’s first scored by our technicians here in the lab.”

The information is sent over to a sleep physician who interprets it to the patient.

As a parent, if your sleep patterns check out fine, chances are you don’t have a set daily routine for your kids, which might be keeping you from sleeping well.

“It’s a matter of just juggling the competing demands that everybody has with work and being a parent, so trying to maintain steady bedtimes and wake up times is important,” Patni said .

Tanaya started doing this to put her health first.

“I had to manage my sleep better. I noticed that when I’m really tired or if I’m not getting adequate sleep, I can feel the change in my head again,” said Mitchell.

Dr.Patni said a lot of parents think they can catch up on sleep on weekends.

“If you cut off just one or two hours of sleep every night, in studies, what you see is that every day there’s a degradation in your performance. In addition to having a regular sleep schedule? Are they minimizing caffeine to really only kind of in the morning because caffeine has a half life of five, 6 hours,” said Patni.

And grabbing a glass of wine, after you get the kids settled into bed, might not be ideal.

“Alcohol in the evenings, sounds great. Makes you a little drowsy, but it actually disrupts the sleep quality,” Patni said.

Overall, in order to get better sleep as a parent, you must cut down on the distractions, which Tanaya said improved her quality of life drastically.

“I’ve been managing my sleep better,” she said. “You know that  means I have to say no to some things, so you know, not hanging out on girls night.


Source:, Ugochi IIoka

How to make workplaces more inclusive for people with invisible disabilities

How to make workplaces more inclusive for people with invisible disabilities

Employees with diabetes, epilepsy, Crohn’s disease, chronic pain, and other invisible disabilities should all be part of your DEI plan, says this HR leader, who is living with a developmental disability.

The conversation around diversity, equity, and inclusion (DEI) has gained significant momentum in recent years, often with a focus on identities related to race, gender, and sexuality. While these discussions are essential and have led to positive changes in the workplace, it’s crucial not to overlook another vital aspect of diversity: disabilities. As we recognize National Disability Employment Awareness Month in October, it’s time to shed light on a significant aspect of disability that often goes unnoticed—the world of invisible disabilities.

Inclusivity in the workplace has come a long way, and many companies have recognized the value of promoting diverse teams and fostering a sense of belonging for all employees. However, as some organizations decide to eliminate Chief Diversity Officers’ roles, we must remain cautious not to alienate employees. It is crucial to ensure that their needs are still met. This is not only because it’s the right thing to do but also because there are legal implications, especially regarding potential discrimination related to disability status.


Disability status is often considered when shaping workplace policies, but too often, these policies focus primarily on physical disabilities. While accessible buildings, adaptive technology, and workspace accommodations are essential in maintaining an inclusive workplace, true inclusivity requires us to go beyond adapting only to the disabilities we see. Numerous disabilities are not immediately apparent, such as diabetes, epilepsy, Crohn’s disease, chronic pain, and visual or auditory disabilities, which can significantly impact how people work. Individuals with these conditions often require additional accommodations to thrive in their roles.

Moreover, we must recognize and destigmatize learning and developmental disabilities that affect social interactions and communication styles, such as autism spectrum disorders, ADHD, mental illness, and other social disabilities. As both an HR leader and someone who lives with a developmental disability, I can personally attest to the challenges we face in the workplace. Our unique communication styles can be misunderstood, and we may be perceived as too direct, unsociable, or in some cases, even unprofessional.

Many of us with learning or developmental disabilities struggle with social interactions or compulsory gatherings, leading to anxiety and discomfort. We may need to make excuses for not staying long at work events or choosing to sit apart to alleviate the anxiety of close proximity. Unfortunately, this can lead to us being seen as aloof or unapproachable when, in truth, we struggle with many social cues others rely on. The isolation we often feel is exacerbated when the work environment fails to educate other employees on interacting with us and making us feel welcomed and valued rather than different.

Over the years that I have worked on adapting to what is considered “normal,” most people do not even realize I have a disability. However, stigma remains a significant concern, especially for non-physical disabilities, which are so unique to the individual that there is no one-size-fits-all approach. For example, accommodations for a full-time wheelchair user can be straightforward. However, accommodating someone with chronic pain who experiences fatigue and only sometimes use a mobility aid is much less so. The spectrum of limitations varies from person to person, making it essential to treat each individual and their needs with the understanding and empathy they deserve.

One of the main challenges faced by individuals with unseen disabilities is the reluctance to disclose their condition at work. Research shows that a staggering 88% of employees with invisible disabilities choose not to reveal them to avoid stigma and discrimination. This fear of being judged or misunderstood can lead to further isolation, resulting in lower morale and reduced productivity. We must create an environment that encourages employees to feel comfortable seeking the accommodations they need without fear of repercussions.


As we celebrate National Disability Employment Awareness Month this October, let us renew our commitment to improving disability awareness in the workplace. Here are some important steps that companies can take to foster a more inclusive environment for employees with unseen disabilities:

  • Educate and Raise Awareness: Offer training and workshops to employees and managers to increase awareness and understanding of unseen disabilities. Create an open dialogue where employees can share their experiences and challenges without fear of judgment.
  • Implement Flexible Accommodation Policies: Implement flexible accommodation policies, recognizing that accommodations may vary widely depending on the person and their disability and that it’s essential to be responsive to their needs.
  • Promote a Culture of Acceptance: Foster a culture of acceptance and empathy where employees feel comfortable being their authentic selves without fear of discrimination. Embrace and celebrate diversity, including those with unseen disabilities, and recognize their strengths and contributions to the organization.
  • Create Employee Resource Groups (ERGs): Establish ERGs for employees with disabilities to provide a support network and platform for sharing experiences and advocating for positive change.
  • Review Existing Policies: Regularly review existing policies to ensure they address the needs of employees with disabilities. Make necessary adjustments to promote inclusivity.

By recognizing the importance of unseen disabilities in the workplace and destigmatizing disabled workers, we can create a more inclusive and supportive environment for all employees. Let us take this National Disability Employment Awareness Month as an opportunity to reflect on our practices and commit to fostering a workplace that embraces diversity in all its forms. Together, we can build a stronger, more inclusive, and compassionate workforce for the future.


Source:, Yolanda Slan

U-M scientists develop a new model for understanding sudden death in epilepsy

U-M scientists develop a new model for understanding sudden death in epilepsy

Researchers at the University of Michigan have developed a model for studying one type of familial epilepsy, opening the door to understanding—and eventually targeting—the mechanisms that lead to the disorder and its associated fatalities.

The research, published in the journal Annals of Neurology, has already revealed important insights into interactions between breathing, heart rate and brain activity during fatal seizures.

Mutations in a gene called DEPDC5 are a common cause of familial focal epilepsy and increase the risk of sudden unexpected death in epilepsy (SUDEP), a devastating consequence of epilepsy that ranks second only to stroke in potential life-years lost due to neurological diseases. But scientists have been unable to determine the underlying processes that lead to SUDEP in DEPDC5-related epilepsy.

“Without a clear understanding of the precise mechanisms that drive SUDEP, it is extremely difficult to predict its occurrence in patients,” said Yu Wang, associate professor of neurology at the U-M Medical School who also works with epilepsy patients at Michigan Medicine. “Having an accurate model that we can study at the molecular level is essential for understanding the complex pathophysiology of this condition and identifying therapeutic targets.”

Model organisms are an important tool for gaining insights into human health and disease that have significant implications for treating patients. By understanding how a genetic mutation alters activities within cells, or even communications between various systems in the body, researchers can uncover specific proteins to target with therapeutics, for example. To date, however, the field lacked an accurate animal model of DEPDC5-related epilepsy.

Now, a team led by Wang and U-M neuroscientist Peng Li has accurately recapitulated a model of DEPDC5-related epilepsy in a mammalian model organism, allowing researchers to better understand what takes place within patients with DEPDC5-related epilepsy and what leads to their increased risk of SUDEP.

“This genetic model offers us a way to further check what is causing the physical changes that take place before SUDEP, and what is causing the epilepsy,” said Li, a faculty member at the U-M Life Sciences Institute and assistant professor of molecular and integrative physiology at the U-M Medical School. “It will help us to really zero in on the cell types that are affected and then to figure out—and ultimately target—the molecular pathways causing these changes.”

With the model, the team has identified a unique pattern in DEPDC5-related fatal seizures.

It starts with breath

Once they determined that the animals were closely recapitulating the characteristics found in humans with DEPDC5-related epilepsy—including the type and frequency of seizures and the approximate age when SUDEP occurs on average—the researchers began to record data on their breathing patterns, cardiac function and neuronal activity. Their goal was to gather baseline information about the animals’ health, as well as to observe how these functions change during naturally occurring seizures.

In instances of fatal seizures, the animals’ breathing rate increased significantly, even before changes in heart rate or the brain’s electrical activity, and then stopped completely. When the seizures ended, the heart rate resumed—but breathing ceased completely and never recovered, leading to a fatal lack of oxygen.

The researchers also found breathing irregularities during nonfatal seizures, and even in the animals’ baseline breathing rates. The team believes these results point to a defect in the brain’s breathing control circuit that makes the animals more vulnerable during seizures, which could contribute to the increased rate of SUDEP in DEPDC5-related epilepsy.

“It appears breathing is the first physiological function being affected in epilepsy, even before we can detect any changes in electrical activity in the brain,” said Li, who is also an assistant professor of biologic and materials sciences at the U-M School of Dentistry. “These findings hint at both a potential treatment—ventilating the animals during an epilepsy episode to rescue breathing—and a potential biomarker for predicting the risk of epilepsy patients who may develop SUDEP.”

Jack Parent, co-director of the Michigan Medicine Comprehensive Epilepsy Center and one of the study’s co-authors said that SUDEP is the epilepsy complication most feared by patients and families.

“This work offers them some hope that the epilepsy research field is making progress towards understanding SUDEP mechanisms, identifying potential biomarkers for those at risk, and devising interventions to prevent these catastrophic events,” he said.


Source:, Emily Kagey

Sudden Unexpected Death In Epilepsy: Know The 7 Warning Signs Of SUDEP

Sudden Unexpected Death In Epilepsy: Know The 7 Warning Signs Of SUDEP

Epilepsy, a neurological condition affecting millions of Indians, can be a challenging journey. While most people with epilepsy lead fulfilling lives with proper management, there’s an aspect that often goes unnoticed: SUDEP, or Sudden Unexpected Death in Epilepsy.

SUDEP is a rare but devastating event where a person with epilepsy dies suddenly, without warning.

We will walk you through the seven crucial signs of SUDEP that everyone should be aware of.

Sudden Unexpected Death In Epilepsy: Know The 7 Warning Signs Of SUDEP

What is SUDEP, and why is it a concern for people with epilepsy?

SUDEP can occur in individuals living with epilepsy. While rare, WHO (World Health Organization) states that it is a grave concern because it can happen without any prior indication or prediction.

7 Warning Signs Of SUDEP Recognizing the signs of SUDEP is crucial for early intervention and prevention. Here are the seven warning signs:

  • Frequent seizures: If you or a loved one experiences an increase in the frequency and intensity of seizures, it could be a red flag for SUDEP.
  • Difficulty breathing during seizures: Struggling to breathe during a seizure is a significant risk factor. Seek medical attention if this occurs.
  • Night-time seizures: SUDEP often occurs during sleep, so night-time seizures should be closely monitored.
  • Unusual posture after seizures: If someone remains in an unusual position or appears to have difficulty moving after a seizure, it is a cause for concern.
  • Seizures while alone: Seizures in solitude can be particularly dangerous. Ensure someone is aware and can provide assistance if needed, highlights the National Institutes of Health.
  • Failure to recover after a seizure: If a person doesn’t regain consciousness or appears confused for an extended period after a seizure, seek immediate medical help.

Young age and epilepsy: SUDEP risk is higher in younger individuals with epilepsy. Extra precautions are essential in these cases.

Preventing SUDEP: What You Can Do

While SUDEP can be frightening, as per the Journal of Neurology, Neurosurgery and Psychiatry there are steps you can take to reduce the risk:

  • Medication: Consistently take prescribed epilepsy medications as directed by your healthcare provider.
  • Regular check-ups: Attend regular check-ups with your neurologist to monitor and manage your epilepsy effectively.
  • Seizure safety: Create a safe environment by removing potential hazards and sharing seizure action plans with friends and family.
  • Lifestyle modifications: Adequate sleep, stress management, and a healthy lifestyle can contribute to seizure control.

On A Final Note… SUDEP, or Sudden Unexpected Death in Epilepsy, is a serious concern for individuals living with epilepsy. Understanding the seven warning signs and taking preventive measures is essential for safeguarding yourself or your loved ones.

Disclaimer: This article is for informational purposes only and should not be considered medical advice. If you have epilepsy or know someone who does, please consult a healthcare professional for expert guidance.


Source:, Amritha K

Social media is under scrutiny following world-first epilepsy law

Social media is under scrutiny following world-first epilepsy law

Key points:

  • Epilepsy contributed to about 1,100 deaths in 2019 according to the AIHW National Mortality Database
  • In a world-first, Zach’s Law was passed in the United Kingdom on September 19, 2023
  • The breakthrough new law has made it a criminal offence for anyone to try to trigger a seizure in someone with epilepsy by targeting them with flashing images online


After three years of campaigning from the Epilepsy Society in the United Kingdom, a new law has passed the House of Commons and House of Lords — making it an official criminal offence to target someone with flashing images online.

At just eight years of age, Zach Eagling, a schoolboy with epilepsy and cerebral palsy, became one of the first victims of a nasty online attack from trolls that was designed to trigger a seizure.

Now, 12-year-old Zach is the namesake of a new law included in the UK Online Safety Bill. Under the passing of this legislation, attackers could face up to five years in jail due to the emotional and physical harm this has caused for people with epilepsy.

However, the impact of Zach’s Law may extend to many platforms that are used by millions of Australians with disability. The Epilepsy Society has been in contact with a number of social media platforms to work on risk reduction for people with epilepsy online, including Twitter, TikTok, GIPHY, Tenor and Facebook.

Zach’s mother, Claire Keer, celebrated the victory after a harrowing experience and multiple years dedicated to the cause.

“When Zach was first attacked on Twitter by internet trolls, sending flashing images to try to trigger a seizure, I could not believe how mindless and malicious people could be,” Ms Keer said.

“My faith in humanity has been completely restored by the unfailing support we have received. I’ve been so proud of Zach as figurehead of the Epilepsy Society’s campaign to make the law on this barbaric behavior fit for the 21st century.”

“I could not be prouder of what Zach has achieved. For the past three and a half years, he has been spearheading the Zach’s Law campaign run by the Epilepsy Society to bring these trolls to justice.

“He has taken time out of school to meet with politicians, policymakers and the media. He has taken on the internet trolls and won.”

The law is a world first for people with epilepsy as unsuspecting people with epilepsy may be impacted through the ongoing work from the Zach’s Law campaign. President of Epilepsy Australia Wendy Groot commended Zach and his mother for their efforts.

“We are fully in favor of laws that protect the rights and well-being of people with epilepsy,” Ms Groot said.

“While this type of behavior has not been an issue here in Australia, as far as I am aware, we abhor the deliberate nature of it and applaud Claire Keer and her son Zach for the work they did to change the law in the UK to fight against it.”

Generally, photosensitive epilepsy is rare in the use of computer monitors and those with a sensitivity to screen flicker should seek a screen filter. Only in exceptional cases would it be necessary to restrict computer work.

High-quality monitors, liquid crystal or LCD screens with a flicker (refresh) rate of at least 60Hz may not pose a problem, according to Epilepsy Australia. The risk, for people with epilepsy, is more likely to be the images on the screen that trigger a seizure — such as in concerted harassment campaigns.


Source:, David McManus

Disturbing graffiti fueling epilepsy stigmatization

Disturbing graffiti fueling epilepsy stigmatization

The Caristas Malta Epilepsy Association expressed profound concern regarding recent incidents involving graffiti that associate epilepsy with monetary symbols.

Such actions significantly contribute to the existing stigmatization that individuals living with epilepsy confront daily. The graffiti emerged after a news story revealed that hundreds of individuals were illicitly receiving social security benefits claiming to have disability. Some 141 have so far been ordered by the courts to return the funds that they were not entitled to, for a total of €2.1 million.

Epilepsy is a neurological condition that affects 1% of the Maltese population, the Caritas Association said.

While the majority of people with epilepsy are capable of leading normal lives, it is crucial to acknowledge the challenges, including psychological ones, that accompany this condition. Individuals living with epilepsy face genuine and often debilitating obstacles that warrant support and understanding from society. The emergence of graffiti connecting epilepsy to monetary symbols is deeply troubling.

This graffiti not only distorts the reality of epilepsy but also perpetuates harmful stereotypes, wrongly insinuating that individuals with epilepsy seek financial gain at the expense of others. Such portrayals are not only false but also deeply hurtful to those who grapple with this condition. Epilepsy, like any other chronic medical condition, deserves to be met with compassion, empathy, and support from our community.

Stigmatization only serves to isolate those who require assistance the most and discourages them from seeking the medical and emotional support they need. We implore community leaders, local authorities, and citizens to unite in addressing this issue. It is imperative to cultivate an inclusive and understanding environment for individuals living with epilepsy, enabling them to access the resources they genuinely require without fear of judgment or discrimination.

We firmly believe that such discriminatory and harmful actions must be treated seriously by the authorities. Preserving the cherished right to freedom of speech should always be accompanied by a commitment to sensitivity and respect, especially when it comes to avoiding the mocking of individuals with disabilities. Together, we can forge a more inclusive and empathetic society that benefits everyone



Flexible thin-film neural electrodes show promise for the diagnosis and treatment of epilepsy

Flexible thin-film neural electrodes show promise for the diagnosis and treatment of epilepsy

Flexible thin-film electrodes placed directly on brain tissue show promise for the diagnosis and treatment of epilepsy, as demonstrated recently by scientists at Tokyo Tech. Thanks to an innovative yet straightforward design, these durable electrodes accurately match the mechanical properties of brain tissue, leading to better performance during electrocorticography recordings and targeted neural stimulation.

Measuring brain activity is a useful technique for diagnosing epilepsy and other neuropsychiatric disorders. Among the several approaches adopted, electroencephalography (EEG) is the least invasive. During EEG recordings, electrodes are typically placed on the scalp. However, this limits the resolution of EEG as the electrical signals from the brain are attenuated and distorted by the time they reach the scalp.

In contrast, electrocorticography (ECoG) involves placement of neural electrodes directly on the surface of the brain. Being in close contact with the region of interest, ECoG electrodes provide better recordings of brain activity. Moreover, it is also possible to send electrical pulses through them to stimulate specific groups of neurons with the aim of managing epileptic seizures. However, conventional ECoG electrodes have a major drawback. They usually do not match the mechanical properties and curvature of brain tissue, resulting in increased brain pressure and other adverse effects. Although soft neural electrodes have been developed to mitigate this issue, they either lack durability and strength or require complex fabrication processes.

To address these problems, a research team guided by Associate Professor Toshinori Fujie of Tokyo Institute of Technology (Tokyo Tech) has developed a new type of flexible neural electrode. Their design and findings, recently published in Advanced Materials Technologies, can revolutionize how ECoG recordings and direct neural stimulation are performed.

The substrate of the proposed electrode consists of a thin film made of a flexible material called polystyrene-block-polybutadiene-block-polystyrene (SBS). The researchers used an inkjet printer to fabricate conductive wiring on the electrode with gold nanoink. Finally, they covered the circuit by stacking another SBS layer as insulation, with laser-perforated microchannels as measurement or stimulation points.

Through extensive mechanical testing and simulations, the researchers demonstrated that the electrode accurately conforms to the shape of brain tissue containing many irregular ridges. Its straightforward design and fabrication process is a major advantage as well, since it is conducive to the widespread adoption of the proposed electrode in practical applications.

As far as we know, this is the first study to demonstrate such ultra-conformable ECoG electrodes based on printed electronics, which closely match the mechanical properties of brain tissue.”

Dr. Toshinori Fujie, Associate Professor, Tokyo Institute of Technology

To showcase the potential of their design, the team conducted several experiments on epilepsy rat models. Using the newly designed ECoG electrodes, they could accurately measure the neural response in the brains of these rats when one of their whiskers was mechanically stimulated. Additionally, they could visualize seizure activity during a chemically-induced epilepsy. Further, by triggering movement in the rats’ whiskers and arms via electric pulses sent through specific channels, the researchers demonstrated that the proposed electrodes can stimulate different regions of the brain.

Overall, these findings highlight the potential of flexible thin-film neural electrodes for the diagnosis and treatment of epilepsy and other brain diseases. Notably, the electrodes did not cause any inflammation or adverse effects in the rats’ brains even several weeks after the procedure, highlighting their compatibility with biological tissue.

The researchers plan on improving their design further to make it suitable for clinical applications. “The integration of our thin-film electrode with an implantable device could make it even less invasive and more sensitive to the brain’s abnormal electrical activity,” explains Dr. Fujie. “This would enable improved diagnostics and therapeutic strategies for the management of intractable epilepsy.”

And we sure hope his visions are realized soon!


Source:, Lily Ramsey, LLM

Florida legislators must ensure patient Rx affordability | Opinion

Florida legislators must ensure patient Rx affordability | Opinion

My daughter and I are two of more than 220,000 Floridians living with epilepsy, and I’ve served as a resource to our local epilepsy community helping to wade through the red tape to ensure people receive the medicine they need to have the best quality of life. What many people might not know is that  up to 70% of people living with epilepsy can become seizure-free with access to antiseizure medicines and an often extensive trial-and-error process to find the medications that work best for each person.

Unfortunately, anti-patient policies practiced by health insurance companies and health care middlemen known as pharmacy benefit managers (PBMs) impose unnecessary access and affordability barriers for epilepsy patients – things like fail first or step therapy requirement, prior authorization, and pocketing billions in discounts without passing savings onto patients.

Many patients benefit from copay coupons and copay assistance, which often come in the form of discounts from drug manufacturers and charitable organizations to help patients afford their medicine. But for patients whose  insurance plans contain a copay accumulator which according to studies, more than 90% do, insurers and PBMs don’t  count the assistance towards a patients deductible – forcing the patient to pay additional expenses out of their own pocket, even though the insurer has already received payment from another source.

In other words, insurance companies and PBMs have created a pathway to double dip from the pockets of patients.

For example, my daughter takes a single antiseizure medicine, which significantly reduces seizures. However, this medicine alone, which she has been using successfully for more than a decade, costs almost $1,500 a month. If we used a $1,000 copay coupon from the drug manufacturer, we would only pay $500 at the counter. But, on a plan with a copay accumulator, only $500 would count toward our health insurance deductible/out-of-pocket maximum – even though the insurer and PBM received a total of $1,500 each month.

As someone who has spent years navigating the system from my volunteer work with the Epilepsy Agency of the Big Bend and previous career at the Florida Department of Health, this is an issue with an easy fix that would have a substantial impact on patients. Copay accumulator programs dramatically diminish patients’ ability to reach their deductibles/out-of-pocket maximums, and greatly impact patients living with inherited chronic conditions such as epilepsy, cystic fibrosis, hemophilia etc.

I’m encouraged by the dialogue at both the federal and state-levels to address affordability while ensuring access and innovation, but we must start by directly lowering out-of-pocket costs for patients.  Here in Florida, State Senator Tom Wright introduced Senate Bill 46 for the 2023 Legislation Session to end copay accumulator programs as 16 states nationwide review similar legislation to ensure that copay assistance – regardless of its form – is contributed toward patient’s deductibles/out-of-pocket maximums.

Please join me in encouraging our state and federal lawmakers to support patient-first policies like Senate Bill 46 in Florida, and the HELP Copays Act in Congress, to make life saving medicine accessible and affordable to Florida’s patients.

Nicole Hill is a patient advocate and volunteer with the Epilepsy Association of the Big Bend. 


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Source:, Nicole Hill

Blood test could help diagnose epilepsy

Blood test could help diagnose epilepsy

A blood test could help identify epilepsy, according to new research from scientists at Lund University in Sweden.

Matilda Ahl and colleagues published their research in Heliyon in March, in which they found that there are higher rates of a protein called IL-6 in the blood in people with epilepsy.

The researchers investigated 56 people with epilepsy, split into four groups: those with temporal lobe epilepsy (TLE), frontal lobe epilepsy (FLE), psychogenic non-epileptic seizures (PNES), and combined TLE and PNES.

The scientists confirmed patients’ seizures using video EEG and knew if they were taking blood samples before or after seizures.

The study found that levels of IL-6 in the blood were higher in people with FLE and TLE, including in the group of people who had both TLE and PNES, compared to people without epilepsy or PNES. After a seizure, the levels of the protein increased even more in people with TLE, but not in people with FLE.

The results also showed that the IL-6 levels were not increased in people with PNES.

Marie Taylor, part of the research team, said that investigating whether someone has epilepsy or PNES takes a lot of resource. She said: “It may require the patient to be admitted to hospital for several days with constant video and EEG surveillance, with medical staff on hand around the clock. It is hard on the patient that it takes time to reach a diagnosis.”

The researchers said the next step is to repeat the research in a broader group of people, including both adults and children.