International Epilepsy Congress

What is different for women living with epilepsy?

Chiara Vona — Fri, 01 Sep 2023 08:03:36 +0000

What is different for women living with epilepsy?

Andrea Wilkinson, Global Patient Engagement, Global Epilepsy & Rare Syndromes

Chiara Vona Fri 01/09/2023 - 10:03

From a young age and especially at the point of puberty, women are faced with societal and physiological experiences and decisions that are different from our male counterparts – such as planning for (or avoiding) pregnancy, the pregnancy months, lactation, post-partum and decades later, menopause. These differences are further complicated for a woman diagnosed with epilepsy. She has a different experience living with her disease than a man does.

Women need to consider their epilepsy treatments while preparing for the health of their unborn. They may be persuaded to undergo a C-section, and they may experience anxiety and fatigue after birth that can impact the frequency of seizures. Safety questions about breastfeeding may arise, along with so many other questions that a woman living with epilepsy must consider. Adding to these countless worries is the stress of finding accurate and relevant information during these pivotal and deeply personal moments.

The simple, but complex question of why is epilepsy different for women was the focus of a recent International Bureau for Epilepsy (IBE) event entitled ‘Women & Epilepsy’, in which I had the privilege of participating. As part of a project by IBE to empower women with epilepsy, experts from various fields were joined by women with the disease to share and discuss their lived experience of epilepsy. They shared clinical and social perspectives on how epilepsy has a unique and significant impact on women, especially once they reach childbearing age.

Neurologists, psychologists, researchers, human rights experts, industry colleagues and, most importantly, women living with epilepsy, who are experienced experts in their disease, underscored:

The clinical and ethical imperative to generate more and better standardized data to inform shared decision making on the use of medication during pregnancy and breastfeeding.
The need for intersectional solutions that go beyond medicines and include policy interventions and psycho-social support.
The importance of collaboration across the medical, academic, advocacy, and private sector communities to drive patient-centered change.
The need for a case team to enable effective communication between a woman’s neurologist or epileptologist team and gynecology team throughout pregnancy and maternity.
The lived experiences of women living with epilepsy must be foundational to any action taken.

��ֳ� is working to advance science for women of childbearing age with chronic diseases and to empower them to make shared decisions about their healthcare. Our effort in addressing knowledge gaps in the care of women of childbearing age began in rheumatology, and we are now embedding an emphasis on women of childbearing age across our current and potential future medicines.

My ��ֳ� colleagues and I are seeking to better understand and apply insights shared by people living with epilepsy and rare syndromes to bring meaningful change to their lives. In 2020, we conducted a social listening project that tracked more than 200,000 public social media posts, across six countries in the European Union and United States, over the course of a year. This listening initiative explored two key questions:

What is the motherhood journey experience of women living with epilepsy?
What are the unmet needs of women living with epilepsy?

Based on the gathered insights, we convened a multidisciplinary community of patients, patient group representatives, and physicians from different therapeutic areas.

By convening this community of experts, along with partnerships with clinical teams, ��ֳ� strives to address knowledge gaps in the care of women of childbearing age through the provision of validated evidence and quality disease management tools.

It is fearless listening, continued collaboration, and a bias for action that will bring a paradigm shift toward protecting women through research — and not from research. Furthermore, this research is just one component in meeting the unique physical, emotional, and social needs of women of childbearing age living with epilepsy.

Mothers, daughters, sisters – all women – should feel confident to request the information they need to make shared decisions about their treatment options before, during and after pregnancy. At ��ֳ�, we are working toward a future where this is possible.

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Comment:

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Meeting unmet needs in epilepsy management through digital health technological solutions

eCMSadmin — Wed, 01 Sep 2021 08:00:00 +0000

Meeting unmet needs in epilepsy management through digital health technological solutions

Cynthia Dilley, Global Epilepsy Strategy

eCMSadmin Wed 01/09/2021 - 10:00

Over the last decade, we have seen significant progress in the development of anti-seizure medications (ASMs), and there are now over a dozen options available for people living with epilepsy. While we have seen advances in epileptic seizure control, there is still a lot more that can be done to help address unmet needs in epilepsy management for both patients and healthcare professionals (HCPs).

As a pharmaceutical company with a significant heritage in epilepsy, we can leverage our leadership to utilize the resources we have available to equip epilepsy community with the tools to address these challenges. In addition to our extensive research and development capabilities, new health technological solutions can provide much needed support to optimize a patient’s journey. Leveraging digital health technology throughout ��ֳ� will allow us to continue to adapt, innovate and address specific unmet needs for people living with epilepsy, such as seizure prediction and coordination of care. Our leadership in epilepsy will remain cemented ensuring we continue to enjoy the competitive advantage gained in areas such as in development collaborations, inorganic opportunities and commercial endeavors.

Seizures, especially focal seizures remain difficult to track and record. Sometimes patients are not sure if they are actual seizures and at other times, they may have mental capability challenges which impede memory. This can make it difficult for HCPs to ascertain a patient’s progress and ensure the right treatment protocol. Our relationship with Byteflies is an exciting opportunity to alleviate this pain-point by providing a discreet wearable electroencephalogram device which enables detection of focal seizures. It’s a differentiated and highly valuable need for patients and HCPs to address concerns and ensure optimized treatment.

The unpredictable nature of epilepsy means that many people living with the disorder remain uncertain of when they will experience their next seizure. This can lead to a significant impact on a person’s quality of life and result in anxiety associated with the fear of experiencing another seizure. This issue could be addressed by simply providing patients with a warning. We continue to focus on seizure prediction as a key to unlock one of the biggest keys in epilepsy: knowing when a seizure is coming and potentially giving enough window to stop the seizure onset. We have partnered externally to begin developing a multimodal seizure prediction system while remaining vigilant for other opportunities in this developing landscape.

In addition to this unpredictability of seizures, there is also inherent unpredictability of treatment as ASMs don’t work universally. Many patients with epilepsy live with a level of uncertainty of whether they are on the right management plan. A recent publication demonstrated the importance of combining machine learning-based data to predict the clinical drug response, suggesting that artificial intelligence can act as a signpost for precision medicine. By partnering on digital solutions to coordination of care, we can begin to streamline the epilepsy management process.

��ֳ�’s recent investment in Nile AI, provides a personalized management platform, allowing patients to coordinate their regimen and track their progress. By pulling together the available data, it is our ambition to make the epilepsy journey more predictable. In addition to this, ��ֳ� has invested in prediction analytics to help patients to determine if they are likely to be resistant to treatment which can help to create a more efficient management pathway much earlier.

At ��ֳ�, we are driven to improve the lives of people living with epilepsy. The epilepsy community is at the forefront of everything we do, and our commitment has never been stronger. Utilizing our experience and expertise, combined with the development of health technology support solutions, we’re excited to fuel the future of epilepsy and provide solutions that people living with epilepsy desperately need.

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Evolving the epilepsy treatment paradigm

eCMSadmin — Sun, 29 Aug 2021 08:00:00 +0000

Evolving the epilepsy treatment paradigm

Konrad Werhahn, Global Epilepsy Strategy

eCMSadmin Sun 29/08/2021 - 10:00

This weekend, the world’s leading clinicians and researchers will come together to exchange a wealth of knowledge at this year’s International Epilepsy Congress. Despite being held in a virtual setting, the congress is a pivotal opportunity for the brightest minds to connect and discuss new innovative solutions for people living with epilepsies. As such, we are proud to be at the forefront of those conversations and identifying new ways to treat epilepsy.

The epilepsies are common group of neurological disorders which are associated with physical and psychological difficulties, leading to a detrimental impact on a person’s quality of life. People who continue to have seizures are at greater risk of several complications, which is why preventing seizures is so important. Despite the significant advancements in treatment options, people living with epilepsy still need to consider the impact that their seizures can have on different aspects of their life.

At ��ֳ�, we understand that more needs to be done to provide further value for patients living with epilepsy. We are continually looking for innovative ways to provide new options for people living with epilepsy, and our strong research capabilities are allowing us to open the door for new future solutions, such as treating the underlying pathophysiology of a given epilepsy syndrome rather than seizures as its symptoms.

Treating underlying disease mechanisms is the final goal of any medical area. In the epilepsies, this is usually not feasible since the vast majority of current treatment options are symptomatic. Tackling this gap would be a break-through and transform the lives of people with the disease beyond suppression of seizure symptoms. Such a paradigm shift of moving from a purely symptomatic to a disease-modifying approach has the potential to transform the field. We strongly believe that delivering molecularly targeted treatment options will provide game changing efficacy for the patients with seizures.

To reach this ambition, we are starting from the patient pathophysiology combined with genomics to identify better validated targets. Using computational design and artificial intelligence we aim to more efficiently identify compounds that have a higher chance of leading to effective therapies. In doing so, we will open the door for new therapeutic modalities, such as gene therapy, as targeted treatment options for monogenic epilepsies and epilepsies with focal structural etiologies. While this is still a very early stage of development, it is exciting to be at the forefront of this potential evolution of the treatment paradigm.

For more than 30 years, ��ֳ� has played a critical role in providing new innovate options for people living with epilepsy. We have provided solutions that have helped transform the treatment landscape and improved the lives of millions of people living with epilepsy. However, we understand that the job is nowhere near finished. We’re driving for new solutions, helping us strive for symptom freedom today, anti-epileptogenic options tomorrow.

For more information on our research capabilities visit: /our-science/Overview

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International Epilepsy Congress

What is different for women living with epilepsy?

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Meeting unmet needs in epilepsy management through digital health technological solutions

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Evolving the epilepsy treatment paradigm

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