Single mother
A single mother balancing appointments, therapies, and everyday joy while her son lives with a rare & complex epilepsy (E+): organiser, advocate, constant comfort.
What are rare and complex Epilepsies?
Rare and complex epilepsies (E+) are a group of severe, often progressive neurological disorders that involve both frequent and difficult-to-manage seizures, and a range of other profound challenges.
While epilepsy is a central aspect of these conditions, it is important to recognize that the seizures themselves are only one part of the problem. Patients living with rare and complex epilepsies and their caregivers face much more complex issues that significantly impact their quality of life. These patients often experience severe cognitive impairments, developmental delays, and motor difficulties that can hinder their ability to engage in daily activities.
These motor and cognitive challenges can be isolating, not only for the patients but also for their families, who must navigate the emotional, physical, and financial strain of caring for someone with such a complex condition.
Many patients and caregivers face also difficulties accessing appropriate healthcare, education, and social support. The lack of specialized resources and services for those with E+ can create barriers to achieving a high quality of life, both for the people with the condition and for their families.
What is the difference between “rare and complex” and other “Epilepsies”?
E+ stands for rare and complex epilepsies that go beyond seizures, encompassing serious neurological and developmental challenges. These conditions profoundly impact patients and their families—including siblings—highlighting the urgent need for comprehensive, lifelong care and a supportive community that empowers every journey.
Stories
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Siblings
Brothers and sisters become quiet co-carers in E+: noticing triggers, easing anxiety, turning fear into play, and keeping family life connected.
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Grandparents
Grandparents steady the family through E+: dependable routines, clinic runs, and respite care—patient love that helps a child feel safe.
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Did you know?
At the heart of our mission are patients and families, guiding every step we take with an inclusive, person-focused approach rooted in ambition and integrity.
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E+ epilepsies are more than seizures
They often include serious cognitive, developmental, and motor challenges that affect every aspect of life.
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Diagnosis can take long time
Many families face long and frustrating journeys before receiving an accurate diagnosis.
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Rare doesn’t mean alone
Thousands of families across Europe and beyond are affected by E+, and E+A is here to bring them together.
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Caregivers carry a heavy load
Parents and siblings often take on complex caregiving roles with little support or recognition.
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Rare doesn’t mean alone
Supporting holistic care that addresses medical, social, and emotional well-being for patients and their families.
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E+ means significant lack of autonomy
Many patients require lifelong assistance with daily activities and personal care, deeply affecting both themselves and their families.
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There’s no one-size-fits-all treatment
E+ conditions require personalized, multidisciplinary care.
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Your voice matters
Patient and caregiver perspectives are essential to improving research, policy, and care
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E+ is underrepresented
Despite their severity, rare and complex epilepsies receive limited attention in research and health policy
Contact us
For enquiries, support, or collaboration opportunities, please do not hesitate to get in touch. Our team is committed to providing timely and helpful responses to all your questions and requests.
info@epilepsyplus.org