Epilepsy: Beyond the Seizures and Taking Action

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Epilepsy News From:

Tuesday, June 9, 2020

The diagnosis of epilepsy carries the weight of much more beyond having seizures. 

  • It is the fearful period between seizures, not knowing when the next one will happen.  
  • It is the difficult conversations with peers, colleagues, new partners or employers when disclosing having epilepsy.  
  • It is the ongoing struggle to get prescription medications in the right formulation and at the right time.  
  • It is the meticulous planning and communication around pregnancy and having a family, balancing the complications of certain medications against the risk of seizures themselves since both can possibly harm fetal health.  
  • It is the endless preparations made and precautions taken to protect one’s self or loved one in the event of a seizure while sleeping, playing a sport, swimming, traveling, etc. 
  • It is the fact that there is never a good time to have a seizure.  

Epilepsy impacts every facet of life, and not only for the person with epilepsy. Parents, siblings, partners, spouses – lives and dynamics on the periphery are touched as well, and all involved have a place in clinical and research priorities. 

Rare Epilepsy Network Registry 

The Epilepsy Foundation has long recognized this fact and over the past five years has endeavored to shine a light on the need to address epilepsy holistically. We were a founding partner of the Rare Epilepsy Network (REN), a coalition of over thirty rare epilepsy organizations, which originated as a natural history registry in 2014. Over three years, data was shared by over 1,400 individuals, the majority being caregivers enrolling on behalf of a child impacted by one of over 40 rare, often devastating, epilepsy diagnoses.  

Comorbidities, developmental milestones, medications and side effects, and countless more elements can be studied to gather deeper insight into what it is like to live with or care for someone with epilepsy. In the affected people enrolled in REN, cognitive comorbidities are reported in approximately 40%, non-verbal status in 16%, and autism in approximately 20%. These comorbidities certainly impact the level of care and multidisciplinary inputs a person living with epilepsy already needs and can profoundly impact the affected person’s quality of life if barriers to management exist.  

Family members and caregivers are also impacted. The University of Washington Caregiver Stress Scale (UW-CSS) was designed to assess stress levels of caregivers of children with epileptic encephalopathy (EE) with input from the REN. An analysis demonstrated that caregivers of children with EE reported significantly higher stress than caregivers of children with other conditions such as Muscular Dystrophy and Down Syndrome.  

Further study is critically needed for the creation and validation of Patient Reported Outcome Measures for people with epilepsy, as well as tools for earlier detection of non-seizure related issues that can be intervened upon. A dashboard to preview a subset of REN data, comparing across diagnoses and the full dataset is available. Researchers can also make data requests.  

Epilepsy Learning Healthcare System 

A priority of the Epilepsy Foundation is to improve outcomes for people living with epilepsy. This commitment grew out of our initial support for REN and transformed into the Epilepsy Learning Healthcare System (ELHS). ELHS is a network dedicated to leading change in the way epilepsy care is provided, centered on targeted quality improvement and committed to incorporating patient and family partner perspectives at every step.  

Data is captured in an organized way at every clinical encounter and real-time improvements are adopted by providers in the pediatric and adult practices. Areas of focus are identified by people affected by epilepsy, and it is known that seizures are only part of the puzzle when living with epilepsy.  

Learn more and become a partner in the mission: all people living with epilepsy will live at their highest quality of life, striving for freedom from seizures and side effects, and we won’t stop until we get there. 

Authored by: Kathleen Farrell MB, BCh, BAO on 6/2020
Reviewed by: Epilepsy Foundation Research on 6/2020

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

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