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In this month’s epilepsy research news, we highlight an unexpected health benefit ([link removed]) of epilepsy neurostimulators and report on a potential explanation ([link removed]) for the effectiveness of fenfluramine in Dravet syndrome. We also present a study suggesting that people who have achieved long-term seizure freedom should speak with their doctors more often about the possibility of weaning off medications ([link removed]) to reduce unnecessary drug burdens.
In addition, given the impact that the COVID-19 pandemic is having on all our lives, we feature two COVID-19 related articles: one examines the psychological well-being ([link removed]) of people with epilepsy and the other highlights recommendations ([link removed]) for patients, caregivers, and clinicians from a group of well-known neurologists.
Finally, we encourage you to participate in ongoing research about COVID-19’s impact on the rare disease community ([link removed]) . Patients and caregivers who take this survey will help the rare disease research community shed light on their needs during the COVID-19 pandemic and future health crises.
Summaries of these articles are presented below:
** Research News
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* Neurostimulators and Psychiatric Disorders: Brain wave recordings from responsive neurostimulator systems allow physicians to differentiate seizure-induced neurobehavioral symptoms from those caused by comorbid psychiatric disorders such as anxiety, depression, and psychosis. This additional information can help guide medication or therapy changes to target the psychiatric illness itself instead of similar symptoms brought on by the seizures themselves. Learn More ([link removed])
* Fenfluramine and Dravet Syndrome: Researchers may have discovered how fenfluramine, which is currently being investigated as an add-on therapy to reduce seizures in people with Dravet syndrome, also seems to promote long-term improvements in cognition, behavior and emotional control. The beneficial effects of seizure reduction and cognitive enhancement may result from the drug’s synergistic effect on two different proteins found on the surface of nerve cells. Learn More ([link removed])
* Antiseizure Drug (ASD) Withdrawal: A Norwegian survey found that people who have achieved long-term seizure-freedom are not talking to their doctors often enough about a plan for discontinuing drug treatment. This suggests that many patients may be living with an unnecessary drug burden. Learn More ([link removed])
* COVID-19 and Psychological Distress: A study conducted at the epilepsy center of West China Hospital showed that people with epilepsy suffered from significantly more psychological distress compared to controls. The research found that independent predictors of this distress are time spent paying attention to COVID-19 and a diagnosis of drug-resistant epilepsy. Learn More ([link removed])
* COVID-19, Epilepsy Management, and Safety: Leading neurologists published two key suggestions on caring for people with epilepsy during the COVID-19 pandemic. First, as much care as possible should be administered at home, including the strategic use of rescue therapies, to keep people out of health care facilities, where they are more likely to encounter COVID-19. Second, to minimize the risk of increased seizure severity or frequency, physicians should ensure that their patients adhere to treatment plans and have a regular supply of medication. Learn More ([link removed])
* Rare Disease Community and COVID-19, a Survey: A new online survey created by the National Institute of Health aims to find out how the COVID-19 pandemic is impacting individuals with rare diseases, their families, and their caregivers. We encourage you to check it out! Learn More ([link removed])
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In case you missed it! Our COVID-19 and Epilepsy Resource Hub ([link removed]) is now live with resources to help families understand the potential impacts of COVID-19 on epilepsy care. This resource hub includes a guide to preparing for telehealth visits ([link removed]) , recorded Q&A sessions, frequently asked questions, and more. Visit Now ([link removed])
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Our mission is to find a cure for epilepsy, by promoting and funding patient-focused research. CURE is a non-profit 501(c)(3) tax-exempt organization. Our tax identification number is 36-4253176.
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