Matilda Modigh
About Matilda
Matilda Modigh is an Epilepsy Clinical Nurse Specialist specialising in pediatric neurology at Karolinska University Hospital in Sweden. In 2018, she co-founded a specialised outpatient clinic for children with drug-resistant epilepsy at Astrid Lindgren Children’s Hospital, with a focus on individualised, accessible, and family-centred care. Her clinical philosophy emphasises looking beyond seizures to recognise the importance of quality of life, psychological well-being, and the everyday challenges faced by children with epilepsy and their families.
Alongside her clinical work, Matilda is a PhD student at Karolinska Institutet, where her research focuses on epilepsy surgery evaluation, including the use of artificial intelligence to identify patients with drug-resistant epilepsy, access to presurgical evaluation, and patient experiences. By integrating patient perspectives, research methodologies, and health care system considerations, her work aims to improve the identification and evaluation of individuals with drug-resistant epilepsy and contribute to more equitable, systematic, and patient-centred care.
Matilda is actively involved in advancing epilepsy nursing nationally and internationally. She currently serves as President of the Swedish ILAE YES Section and the Swedish ILAE Nursing Section. Beginning in 2027, she will also lead the ILAE Nursing Section Europe.
Through her clinical practice, research, and leadership, Matilda is deeply committed to improving the lives of people living with drug-resistant epilepsy. Her work is driven by a passion for helping individuals and families navigate the challenges of epilepsy, improving access to specialised care, and ensuring that every person has the opportunity to receive the evaluation, treatment, and support they need.
Areas of focus
epilepsy speicalist nursing
drug-resistant epilepsy
quality of life
psychosocial welbeing
Links
LinkedIn | Karolinska Institutet | ILAE | Orcid | ResearchGate
Episode
Fewer Seizures, But at What Cost?
05 Nov 2026
Can fewer seizures sometimes come at the expense of quality of life? Epilepsy Specialist Nurse (ESN) Matilda Modigh goes into the challenges of living with drug-resistant epilepsy, surprising, positive findings about children's experiences of long-term video EEG monitoring (they appreciated it!), and the balance between seizure control, medication side effects and wellbeing. Discover how ESNs support independence, safety, mental health, and quality of life.