Episode #51 - Speaking Up About SUDEP: Two Mothers’ Stories featuring Libby Boyce and Jessica Brandes

Share
Subscribe

Sudden Unexpected Death in Epilepsy, or SUDEP, is the most devastating outcome that can occur as a result of epilepsy. Yet, physicians often avoid discussing it with newly diagnosed patients. Doctors may not wish to upset patients who may already be experiencing the stress and uncertainty that comes with a new epilepsy diagnosis or they may feel that the risk of SUDEP is low and thus don’t want to potentially scare the patient. However, new data indicate that SUDEP occurs in approximately 1 in 1000 adults and children with epilepsy. Guidance on risk factors for SUDEP and possible ways to mitigate these risks is available. Yet, if information about SUDEP is not shared with patients and families, they can’t make choices to reduce the risk.

On this episode of Seizing Life, Libby Boyce and Jessica Brandes, two mothers who each lost a son to SUDEP, discuss how they hope to transform tragedy and grief into action and change. Libby Boyce’s son Cameron passed away from SUDEP in July 2019.  He was only 20 years old.  A month later, in August of 2019, Jessica Brandes lost her 8-year-old son Wiley to SUDEP.  Neither family had been told about the risk of SUDEP.

What should a patient be told about SUDEP? Libby and Jessica tell their stories, discuss what they were and weren’t told about their sons’ epilepsy, and outline what should be done to build awareness of SUDEP in both the epilepsy and medical communities. Gain perspective on this very difficult, but critically important topic from two moms who want to bring an end to SUDEP through awareness, change, and research.

Learn more about breathing dysfunction caused by seizures, and data for breathing dysfunction as a possible means to intervene and prevent SUDEP, in our webinar Breathing and SUDEP: Research & the Influence of Seizures on the Respiratory System.

Download Audio

Want to download this episode? Fill out the form below and enjoy the podcast any time you’d like!

    Back to Episode Download PDF

    Speaking Up About SUDEP: Two Mothers’ Stories

    Related Episodes

    featured episode
    AdvocacyFamily
    September 20, 2023

    #125 An Extraordinary Life of Autism, Epilepsy, and Advocacy

    Guest: Barbara D'Amora

    This week on Seizing Life® Barbara D’Amora tells us about her son Nicholas, who lived with autism and epilepsy and became an active and inspirational advocate for the autistic community despite being nonverbal.

    featured episode
    Living with EpilepsyTypes of Epilepsy
    September 6, 2023

    #124 A Young Woman’s Journey with Jeavons Syndrome

    Guest: Kiley Flowers

    This week on Seizing Life®, recent college graduate and CURE Epilepsy summer intern Kiley Flowers joins us to talk about Jeavons syndrome and share her personal journey with this rare form of generalized epilepsy.

    featured episode
    AdvocacyFamily
    August 23, 2023

    #123 Pursuing Effective Epilepsy Treatment and Running for Research

    Guest: Clare Phelps

    This week on Seizing Life® Clare Phelps shares the difficult diagnosis and frustrating treatment journey of her young daughter Sophie, whose epilepsy has so far been treatment resistant.