Episode #123 - Pursuing Effective Epilepsy Treatment and Running for Research featuring 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.

In March 2021 at the age of three, Sophie Phelps experienced her first tonic-clonic seizure, which was diagnosed as a febrile seizure by emergency room staff. Four months later, Sophie experienced another tonic-clonic seizure, which was again labeled a febrile seizure. However, her seizures continued in a rapid onset during the next several weeks. Sophie was admitted and discharged from the hospital numerous times with repeated reassurances to her mother that the seizures were complex febrile seizures. Within the span of a month, Sophie went from a normal, healthy child to experiencing recurring, tonic-clonic seizures that would often dangerously impact her oxygen levels. Clare details the frightening and frustrating early months of her daughter’s epilepsy and her years-long journey through various neurologists and epileptologists getting second, third, and fourth opinions. She discusses the numerous therapies and medications that Sophie has tried to better control her seizures, and how the seizures and medications have impacted Sophie’s physical and cognitive health. Clare also talks about her advocacy efforts as a CURE Epilepsy Champion running in the Chicago Marathon, explains why epilepsy research is important to her, and offers advice for parents of children living with epilepsy and physicians who are treating those with epilepsy.

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

    Pursuing Effective Epilepsy Treatment and Running for Research

    Related Episodes

    featured episode
    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
    AdvocacyLiving with Epilepsy
    August 9, 2023

    #122 From Hiding Diagnosis to Advocating for Awareness: A Young Woman’s Epilepsy Journey

    Guest: Mariah Mayhugh

    This week on Seizing Life® Mariah Mayhugh recounts her epilepsy journey, from hiding her diagnosis to becoming a passionate advocate for epilepsy awareness.

    featured episode
    AdvocacyLiving with Epilepsy
    June 28, 2023

    #119 Love, Marriage, and Epilepsy

    Guest: Tiffany and Chris Kairos

    This week on Seizing Life® we speak with epilepsy advocates and married couple Tiffany and Chris Kairos about the impact that epilepsy has had on their marriage and professional lives.