Episode 52: Prolonged Seizures (Sponsored by UCB)

In a special episode of TSC Now, Dan interviews Bridgett Langstaff, mom to Jude, a 17-year-old living with tuberous sclerosis complex (TSC) and epilepsy. Bridgett shares Jude’s diagnosis story and how they ultimately made their way to Mass General Hospital and Dr. Thiele. She also talks about Jude’s ongoing struggle with seizures, from infantile spasms as a baby, to partial seizures, to tonic clonic seizures as he started going through puberty, and she details their journey to achieve seizure control through multiple medications, the ketogenic diet, and surgery. Finally, she shares what it’s like as a parent to witness a prolonged seizure (one lasting longer than 3 minutes) and how and when they decide to administer rescue medication to stop a seizure.

This podcast was sponsored by UCB Biopharma, in an effort to raise awareness of prolonged seizures. UCB was not involved in the content development for this podcast.

UCB is currently running the STARS study, a clinical trial researching an investigational medication for people who experience prolonged epileptic seizures (i.e. lasting more than 3 minutes) who are over the age of 12. The STARS Study is testing an inhaler containing an investigational drug that has been designed to potentially stop a prolonged seizure once it has begun. If you are interested in learning more, visit www.starsepilepsystudy.com to learn more or contact a Patient Navigator to better understand this study at 470-523-2502.