Posts by: Marisa Wexler

uncategorized

Telehealth visits — conferencing with patients via video or phone calls — are generally viewed favorably by both the treating physicians and the parents of children with epileptic conditions like ... Read more

January 14, 2021January 14, 2021

Seizure-causing Disorders Can Take Emotional Toll on Siblings

News

Having a sibling with Lennox-Gastaut syndrome and other seizure-causing conditions can take a psychological toll that is not always recognized by parents, research shows. The findings were published in Epilepsy and ... Read more

November 5, 2020November 5, 2020

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

News, syndicated

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations ... Read more

October 21, 2020October 20, 2020

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

News, syndicated

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series ... Read more

July 9, 2020July 9, 2020

Report of Tongue Lesions Highlights Importance of Dental Check-ups in LGS

uncategorized

Two individuals with Lennox-Gastaut syndrome (LGS) who had masses on their tongues, presumably as a result of tongue biting during seizures, were described in a new case report. These cases ... Read more

July 2, 2020July 2, 2020

Callostomy Using Lasers Appears to Ably Treat Drug-resistant Seizures in LGS

uncategorized

A minimally invasive surgery using lasers to sever connections between the two halves of the brain can effectively and safely lower seizure frequency in people with Lennox-Gastaut syndrome (LGS) who ... Read more

April 9, 2020April 9, 2020

Epidiolex No Longer Seen as Controlled Substance by US DEA

uncategorized

The U.S. Drug Enforcement Administration (DEA) has reclassified Epidiolex, an oral cannabidiol solution used to treat seizures, as a non-controlled substance, potentially easing patient access to it. This decision removes all federal ... Read more