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Background <p>In epilepsy, seizure freedom is widely regarded as the primary therapeutic endpoint. However, equating recovery with seizure cessation alone may overlook relevant psychological, social, and existential dimensions. The concept of the “burden of normality” describes the disequilibrium that can arise when individuals are expected to resume ordinary life after prolonged illness. We propose framing seizure freedom as the beginning of a transitional phase—analogous to developmental transitions—characterized by identity renegotiation and adjustment to new roles and expectations.</p> Methods <p>This paper stems from a multidisciplinary meeting held in Rome (June 2025) involving neurologists, a neuropsychologist, a medical anthropologist, and a patient representative. Through multidisciplinary discussion, participants explored the implications of seizure freedom across biomedical and psychosocial domains. Key themes were identified through qualitative synthesis and translated into practice-oriented considerations.</p> Results <p>Seizure freedom was conceptualized not as the end of illness experience but as the onset of a complex recovery phase. Key themes emerged, including: [<CitationRef CitationID="CR1">1</CitationRef>] recovery as a multidimensional process extending beyond symptom control; [<CitationRef CitationID="CR2">2</CitationRef>] psychosocial challenges, including identity disruption, emotional ambivalence, and relational strain; [<CitationRef CitationID="CR3">3</CitationRef>] persistent biological and neuropsychiatric burdens despite seizure control; and [<CitationRef CitationID="CR4">4</CitationRef>] gaps in current care models, which rarely address post-remission needs.</p> Conclusions <p>Seizure freedom should be reframed as the start of a transitional recovery phase. Holistic care strategies and broader outcome measures are needed to support sustained reintegration and long-term well-being.</p>

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Seizure freedom as a transitional phase of recovery: rethinking the burden of normality in epilepsy integrating medical and lived perspectives in post-remission care

  • 期刊论文

  • 发表日期：

    2026年4月23日

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  • Giancarlo Di Gennaro,
  • Lia Giancristofaro,
  • Liliana Grammaldo,
  • Angelo Labate,
  • Andrea Tomasini

摘要

Background

In epilepsy, seizure freedom is widely regarded as the primary therapeutic endpoint. However, equating recovery with seizure cessation alone may overlook relevant psychological, social, and existential dimensions. The concept of the “burden of normality” describes the disequilibrium that can arise when individuals are expected to resume ordinary life after prolonged illness. We propose framing seizure freedom as the beginning of a transitional phase—analogous to developmental transitions—characterized by identity renegotiation and adjustment to new roles and expectations.

Methods

This paper stems from a multidisciplinary meeting held in Rome (June 2025) involving neurologists, a neuropsychologist, a medical anthropologist, and a patient representative. Through multidisciplinary discussion, participants explored the implications of seizure freedom across biomedical and psychosocial domains. Key themes were identified through qualitative synthesis and translated into practice-oriented considerations.

Results

Seizure freedom was conceptualized not as the end of illness experience but as the onset of a complex recovery phase. Key themes emerged, including: [1] recovery as a multidimensional process extending beyond symptom control; [2] psychosocial challenges, including identity disruption, emotional ambivalence, and relational strain; [3] persistent biological and neuropsychiatric burdens despite seizure control; and [4] gaps in current care models, which rarely address post-remission needs.

Conclusions

Seizure freedom should be reframed as the start of a transitional recovery phase. Holistic care strategies and broader outcome measures are needed to support sustained reintegration and long-term well-being.