Living with Epilepsy: The Importance of Access to Treatment and Support
Epilepsy, a neurological disorder characterized by recurrent seizures, affects millions of people worldwide. It is a challenging condition to manage, but with the right support and access to treatment, patients can continue to lead fulfilling lives. This was the experience of Valentina, who despite living with epilepsy, was able to become seizure-free and pursue her studies to qualify as a paediatric physiotherapist. Her story emphasizes the vital importance of access to treatment for people living with epilepsy.
International Epilepsy Day: A Focus on WHO’s Roadmap for Better Care
The International Epilepsy Day for 2024 aims to promote public understanding of epilepsy and gather support for a 10-year World Health Organization (WHO) epilepsy roadmap. This roadmap focuses on improving care, access to treatment, and promoting overall brain health. The goal is to increase service coverage for epilepsy by 50% and for 80% of countries to develop or update legislation to protect the human rights of those with epilepsy. By sharing personal stories and attending #EpilepsyDay events globally, we can contribute to raising awareness and support for people living with epilepsy.
Personalized Care and Advanced Procedures in Epilepsy Treatment
The Sutter Health network provides an array of epilepsy and seizure services, offering personalized care and advanced procedures to treat and manage this condition. They are equipped with specially trained epileptologists and comprehensive epilepsy centers, utilizing the latest technology and treatments. Their participation in epilepsy research studies and facilitation of job placement services for those with epilepsy further demonstrate their commitment to improving the lives of patients.
Improving Access to Specialized Epilepsy Care through Telemedicine
The REACT Program, a collaborative effort by HRSA and AAP, aims to improve access to specialized epilepsy care for children and youth in rural and medically underserved areas in Kansas through telemedicine. This initiative creates a ‘medical home’ for patients, where all their care is coordinated, and allows patients to receive care closer to home. By spreading epilepsy knowledge and resources, the program aids in improving care for children living with epilepsy.
Addressing Disparities in Epilepsy Care for Patients with Intellectual Disability
The challenge of accessing suitable epilepsy care is even more pronounced for patients with intellectual disability (ID). These individuals face a greater risk of inappropriate prescribing, polypharmacy, and misdiagnosis. Physicians play a key role in reducing these disparities by engaging in education, training, and reflecting on personal assumptions and biases. More research and effort are needed to address the health disparities faced by this population.
Updates and Resources from the National Association of Epilepsy Centers
The National Association of Epilepsy Centers (NAEC) plays a crucial role in improving the lives of people with epilepsy. They have recently announced new guidelines for epilepsy centers and collaborated with other organizations to approve a new subspecialty code for epileptologists. The NAEC also provides information on CDC supported epilepsy programs and the Managing Epilepsy Well Network. These resources can serve to empower patients and improve the quality of their care.
In conclusion, living with epilepsy is a journey filled with challenges. However, with the right support, access to treatment, and continued efforts from health organizations, patients can lead fulfilling and productive lives. The experiences of individuals like Valentina serve as powerful reminders of the resilience and strength of those living with epilepsy.