🎬 Epilepsy Sparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | PPI Lead | #Epilepsy & #MentalHealth Research fiend | All views my own
Torie Robinson
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They are colleagues.
PPI (Patient Public Involvement) improves research and achieves better outcomes for people affected by epilepsy. Reetta said that she wouldn't understand the disease as well as she does without them!
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It's Reetta Kälviäinen 🇫🇮: "Beyond the Myoclonus: Recognizing the Clinical Face of PMEs (Progressive Myoclonic Epilepsy) EPM1 epilepsy"
Reetta shared how the best epilepsy research is done with patients and families. And not just with the usual "awareness" activities it's research collaboration. 1/
Also:
〰️ Cognitive impairment
〰️ Sleep pattern disruption - seizure trigger
White matter degeneration
〰️ Unified Myoclonus Rating Scale (UMRS)
〰️ Home monitoring: EMG for myoclonus not reported by patients
〰️ Gait restriction or ataxia
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