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CURE Epilepsy

Seizing Life

A Medicine and Health & Fitness podcast

#101 in Medicine · 🇮🇪 #173 in Medicine · 🇳🇬
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About the show

Seizing Life® is a CURE Epilepsy podcast and videocast aiming to inspire empathy, offer personal stories, provide information on epilepsy research and care, and give hope as we search for a cure for epilepsy. Listen as doctors, researchers, those living with epilepsy and their loved ones share stories and insights with our host, Kelly Cervantes.

Newest episodes

Author’s Personal Epilepsy Journey Inspires Young Adult Novel

38 min

Author Kara Storti shares her decades-long journey withepilepsy and explains how her experiences inspired her recent novel, The Electric Life of Lavender Lewis.   Kara details her journey with epilepsy – from hiding unexplained episodes as a teenager to the realization years later that these were focal seizures-- and ultimately finding a diagnosis and treatment that brought greater control. Kara discusses how epilepsy shapes her independence, work, and creative life. She shares how her own experiences with seizures inspired her recent novel, The Electric Life of Lavender Lewis, which centers on a teenage girl living with epilepsy. Kara also discusses the importance of authentic epilepsy representation in media and literature, the value of combating stigma, and providing support and hope to those living with epilepsy.   ABOUT CURE EPILEPSY CURE Epilepsy is the leading, non-governmentalfunder of epilepsy research. Since its inception in 1998, CURE Epilepsy has raised more than $100 million to fund epilepsy research and other initiatives that will lead the way to cures for the epilepsies. CURE Epilepsy funds grants for young and established investigators and to–date has awarded more than 300 cutting-edge projects in 18 countries around the world. Our mission is to fund breakthrough research that will transform the lives of people living with epilepsy as we lead the search for a cure. LEARN MORE ABOUT EPILEPSY Visit the “Understanding Epilepsy” section ofCURE Epilepsy’s website: https://www.cureepilepsy.org/for-patients/understanding/   STAY CONNECTED WITH CURE EPILEPSY Sign up for our newsletter for the latest in epilepsy researchnews: https://www.cureepilepsy.org/subscribe/ Follow us on Facebook:  https://www.facebook.com/CUREforEpilepsy/ Follow us on Twitter: https://twitter.com/cureepilepsy/ Follow us on Instagram:  https://www.instagram.com/cureepilepsy/ INCREASE YOUR IMPACT Share your story: https://www.cureepilepsy.org/personal-stories/ Help us find a cure: h...

Remembering Cameron Boyce: Friends Share Memories and Raise Awareness of Epilepsy and SUDEP

29 min

Actors Sophie Reynolds and Karan Brar join Kelly for aheartfelt conversation about their close friend Cameron Boyce—his humor, curiosity,compassion, and the way he approached living with epilepsy.   Sophie and Karan reflect on being with Cameron when heexperienced his first seizure, learning about epilepsy alongside him, and seeing how he continued to embrace life while managing his diagnosis. They also speak candidly about learning of Sudden Unexpected Death in Epilepsy (SUDEP)after Cameron’s passing and the urgent need for greater awareness, research, and honest conversations about SUDEP.   Sophie and Karan share why they joined The Cameron BoyceFoundation, what they value about the organization’s achievements, and what its long-term stewardship by CURE Epilepsy means for the community fostered by the Foundation. Sophie and Karan celebrate Cameron’s friendship, legacy, and the “soft bravery” he displayed in living with epilepsy and embracing life with an open heart, joy, and enthusiasm.   ABOUT CURE EPILEPSY CURE Epilepsy is the leading, non-governmentalfunder of epilepsy research. Since its inception in 1998, CURE Epilepsy has raised more than $100 million to fund epilepsy research and other initiatives that will lead the way to cures for the epilepsies. CURE Epilepsy funds grantsfor young and established investigators and to–date has awarded more than 300 cutting-edge projects in 18 countries around the world. Our mission is to fund breakthrough research that will transform the lives of people living with epilepsy as we lead the search for a cure.   LEARN MORE ABOUT EPILEPSY Visit the “Understanding Epilepsy” section ofCURE Epilepsy’s website: https://www.cureepilepsy.org/for-patients/understanding/   STAY CONNECTED WITH CURE EPILEPSY Sign up for our newsletter for the latest in epilepsy researchnews: https://www.cureepilepsy.org/subscribe/ Follow us on Facebook: https://www.facebook.com/CUREforEpilepsy/ Follow us on Twitter: https://twitter.com/cureepilepsy/ Fo...

Former NINDS Director Dr. Walter Koroshetz on Current Challenges and Promise in Epilepsy Research

47 min

On this month’s episode of Seizing Life, Kelly speakswith neurologist, neuroscientist, and former Director of the National Institute of Neurological Disorders and Stroke (NINDS) Dr. Walter Koroshetz about the state of epilepsy research, the critical role of federal funding, especiallyfor early-career scientists, and the advances bringing new hope to people and families impacted by epilepsy.   Dr. Koroshetz shares insights from his decades-long careerin neurology and neuroscience, including his leadership at NINDS. He explains how epilepsy research has improved our understanding of seizures and led to the identification of hundreds of genetic causes of epilepsy, opening the door tomore precise and potentially curative therapies. The conversation explores the promise of genomic therapies, gene editing, closed-loop brain stimulation, andtechnologies emerging from the BRAIN Initiative, a partnership between federal and non-federal partners with a common goal of accelerating the development of innovative neurotechnologies.   The second half of the episode focuses on the currentresearch landscape with an eye towards the potential future impacts on epilepsy research. Dr. Koroshetz outlines the research roles of government, institutions, industry, and nonprofit organizations, and explains how they do and don’t collaborate with one another. He shares his view of the currentfederal funding situation, explains the history and effects of flat budgets in government funding, and reveals what he sees as the biggest threat to the scientific workforce and our country’s role as a leader in research. Finally, Dr. Koroshetz offers his advice for young scientists and what he sees as themost promising areas of epilepsy research that will improve the lives of patients and families living with epilepsy in the coming years.   ABOUT CURE EPILEPSY CURE Epilepsy is the leading, non-governmentalfunder of epilepsy research. Since its inception in 1998, CURE Epilepsy has raised more than $100 mi...

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All episodes

Author’s Personal Epilepsy Journey Inspires Young Adult Novel

38 min

Author Kara Storti shares her decades-long journey withepilepsy and explains how her experiences inspired her recent novel, The Electric Life of Lavender Lewis.   Kara details her journey with epilepsy – from hiding unexplained episodes as a teenager to the realization years later that these were focal seizures-- and ultimately finding a diagnosis and treatment that brought greater control. Kara discusses how epilepsy shapes her independence, work, and creative life. She shares how her own experiences with seizures inspired her recent novel, The Electric Life of Lavender Lewis, which centers on a teenage girl living with epilepsy. Kara also discusses the importance of authentic epilepsy representation in media and literature, the value of combating stigma, and providing support and hope to those living with epilepsy.   ABOUT CURE EPILEPSY CURE Epilepsy is the leading, non-governmentalfunder of epilepsy research. Since its inception in 1998, CURE Epilepsy has raised more than $100 million to fund epilepsy research and other initiatives that will lead the way to cures for the epilepsies. CURE Epilepsy funds grants for young and established investigators and to–date has awarded more than 300 cutting-edge projects in 18 countries around the world. Our mission is to fund breakthrough research that will transform the lives of people living with epilepsy as we lead the search for a cure. LEARN MORE ABOUT EPILEPSY Visit the “Understanding Epilepsy” section ofCURE Epilepsy’s website: https://www.cureepilepsy.org/for-patients/understanding/   STAY CONNECTED WITH CURE EPILEPSY Sign up for our newsletter for the latest in epilepsy researchnews: https://www.cureepilepsy.org/subscribe/ Follow us on Facebook:  https://www.facebook.com/CUREforEpilepsy/ Follow us on Twitter: https://twitter.com/cureepilepsy/ Follow us on Instagram:  https://www.instagram.com/cureepilepsy/ INCREASE YOUR IMPACT Share your story: https://www.cureepilepsy.org/personal-stories/ Help us find a cure: h...

Remembering Cameron Boyce: Friends Share Memories and Raise Awareness of Epilepsy and SUDEP

29 min

Actors Sophie Reynolds and Karan Brar join Kelly for aheartfelt conversation about their close friend Cameron Boyce—his humor, curiosity,compassion, and the way he approached living with epilepsy.   Sophie and Karan reflect on being with Cameron when heexperienced his first seizure, learning about epilepsy alongside him, and seeing how he continued to embrace life while managing his diagnosis. They also speak candidly about learning of Sudden Unexpected Death in Epilepsy (SUDEP)after Cameron’s passing and the urgent need for greater awareness, research, and honest conversations about SUDEP.   Sophie and Karan share why they joined The Cameron BoyceFoundation, what they value about the organization’s achievements, and what its long-term stewardship by CURE Epilepsy means for the community fostered by the Foundation. Sophie and Karan celebrate Cameron’s friendship, legacy, and the “soft bravery” he displayed in living with epilepsy and embracing life with an open heart, joy, and enthusiasm.   ABOUT CURE EPILEPSY CURE Epilepsy is the leading, non-governmentalfunder of epilepsy research. Since its inception in 1998, CURE Epilepsy has raised more than $100 million to fund epilepsy research and other initiatives that will lead the way to cures for the epilepsies. CURE Epilepsy funds grantsfor young and established investigators and to–date has awarded more than 300 cutting-edge projects in 18 countries around the world. Our mission is to fund breakthrough research that will transform the lives of people living with epilepsy as we lead the search for a cure.   LEARN MORE ABOUT EPILEPSY Visit the “Understanding Epilepsy” section ofCURE Epilepsy’s website: https://www.cureepilepsy.org/for-patients/understanding/   STAY CONNECTED WITH CURE EPILEPSY Sign up for our newsletter for the latest in epilepsy researchnews: https://www.cureepilepsy.org/subscribe/ Follow us on Facebook: https://www.facebook.com/CUREforEpilepsy/ Follow us on Twitter: https://twitter.com/cureepilepsy/ Fo...

Former NINDS Director Dr. Walter Koroshetz on Current Challenges and Promise in Epilepsy Research

47 min

On this month’s episode of Seizing Life, Kelly speakswith neurologist, neuroscientist, and former Director of the National Institute of Neurological Disorders and Stroke (NINDS) Dr. Walter Koroshetz about the state of epilepsy research, the critical role of federal funding, especiallyfor early-career scientists, and the advances bringing new hope to people and families impacted by epilepsy.   Dr. Koroshetz shares insights from his decades-long careerin neurology and neuroscience, including his leadership at NINDS. He explains how epilepsy research has improved our understanding of seizures and led to the identification of hundreds of genetic causes of epilepsy, opening the door tomore precise and potentially curative therapies. The conversation explores the promise of genomic therapies, gene editing, closed-loop brain stimulation, andtechnologies emerging from the BRAIN Initiative, a partnership between federal and non-federal partners with a common goal of accelerating the development of innovative neurotechnologies.   The second half of the episode focuses on the currentresearch landscape with an eye towards the potential future impacts on epilepsy research. Dr. Koroshetz outlines the research roles of government, institutions, industry, and nonprofit organizations, and explains how they do and don’t collaborate with one another. He shares his view of the currentfederal funding situation, explains the history and effects of flat budgets in government funding, and reveals what he sees as the biggest threat to the scientific workforce and our country’s role as a leader in research. Finally, Dr. Koroshetz offers his advice for young scientists and what he sees as themost promising areas of epilepsy research that will improve the lives of patients and families living with epilepsy in the coming years.   ABOUT CURE EPILEPSY CURE Epilepsy is the leading, non-governmentalfunder of epilepsy research. Since its inception in 1998, CURE Epilepsy has raised more than $100 mi...

Epilepsy, Identity, and AI: Processing the Impacts of an Adult-Onset Diagnosis

35 min

In this episode of Seizing Life, Katie Czyz talksabout being diagnosed with adult-onset epilepsy at age 39 after more than a decade of symptoms initially mistaken for panic attacks. Katie describes the focal aware seizures she experienced for years without realizing they were seizures, the mix of relief and grief that came with finally receiving adiagnosis, and the challenges of finding a treatment plan while managing medication side effects, memory loss, brain fog, and the emotional impact of epilepsy.   Katie also shares how she turned to artificial intelligence(AI)—not as a replacement for medical care, therapy, or human connection, but as a form of “cognitive scaffolding” to help organize her thoughts, process emotions, and prepare for difficult conversations with loved ones and her therapist. She discusses the personal essay she wrote for the New York Times’ Modern Love column, the response she received from people living with epilepsy and their caregivers, and why sharing her story helped others recognize theoften-hidden experience of focal seizures. This conversation explores the symptoms and impacts ofadult-onset epilepsy, the mental health effects of diagnosis and treatment, and both the promise and limitations of AI as a tool for those navigating chronic illness. CURE Epilepsy does not endorse using AI in place of professional mental health support or medical advice.   ABOUT CURE EPILEPSY CURE Epilepsy is the leading, non-governmentalfunder of epilepsy research. Since its inception in 1998, CURE Epilepsy has raised more than $100 million to fund epilepsy research and other initiatives that will lead the way to cures for the epilepsies. CURE Epilepsy funds grants for young and established investigators and to–date has awarded more than 300 cutting-edge projects in 18 countries around the world. Our mission is to fund breakthrough research that will transform the lives of people living with epilepsy as we lead the search for a cure.   LEARN MORE ABOUT EPILE...

Nicole Teeny on Epilepsy, Endurance, and Running with Horses

43 min

Writer, filmmaker, and podcast creator Nicole Teeny joinsKelly to share her journey with adult-onset epilepsy and the deeply personalstory behind her ESPN 30 for 30 audio documentary, GIRL v. HORSE. Epilepsy entered Nicole Teeny’s life in her early thirties,upending her life, work, creativity, and passion for running. Nicole discusses the shock of her first tonic-clonic seizure, the long process of diagnosis and finding a medication that helped control her seizures while allowing her to feel like herself, as well as the emotional impact of epilepsy on her identity and relationship to her own body. When epilepsy interrupted Nicole’s professional life it alsoderailed her running routine, an activity that she had long depended on for both physical and mental well-being. As Nicole struggled to gain seizure control through a series of medications, she also set an audacious goal for herself: running a 50-mile endurance race against horses. With support from her wife, family, and doctors, Nicole found ways to train safely, confront uncertainty, and reclaim a sense of connection to her body. In this inspiring conversation, she details how preparing for the race helped her learn to livewith epilepsy by focusing on “controlling the controllables,” and explains how the experience became a four-part ESPN documentary series.   Nicole’s story is a powerful reminder of the resilience ofpeople living with epilepsy, the importance of community and support, and the urgent need for continued epilepsy research to improve treatments and ultimately lead us to a cure.    ABOUT CURE EPILEPSY CURE Epilepsy is the leading, non-governmental funder of epilepsyresearch. Since its inception in 1998, CURE Epilepsy has raised more than $100 million to fund epilepsy research and other initiatives that will lead the way to cures for the epilepsies. CURE Epilepsy funds grants for young and established investigators and to–date has awarded more than 300 cutting-edge projects in 18 countries around th...

Epilepsy and Medical Trauma: Recognizing, Accepting, and Healing

40 min

On this month’s episode of Seizing Life®, Kelly Cervantes speaks with neuropsychologist Dr. James Jackson about medical trauma and the often-overlooked emotional toll of living with epilepsy. Dr. James Jackson, psychologist and neuropsychologist at Vanderbilt University Medical Center, and author of the recently published Reclaiming Your Life from Medical Trauma, discusses this relatively new term and explains how it can present in both patients and their family members. Growing up the son of a father living with epilepsy, Dr. Jackson understands personally the psychological and emotional impacts it can have on those living with the disorder as well as those who love them. He shares how seizures, hospital stays, ongoing uncertainty, and even everyday medical experiences can leave lasting effects on patients, caregivers, and entire families. He explains why epilepsy-related trauma is unique, and how it can show up as anxiety, avoidance, shame, or PTSD-like symptoms, and offers insights on recognizing warning signs and seeking support. Based on his work with patients and caregivers as well as his own personal experiences, Dr. Jackson encourages early mental health support, sharing his approach of Acceptance and Commitment Therapy to help patients begin to heal and move towards building a rich, meaningful life even in the presence of fear and uncertainty. As those in the epilepsy community know, epilepsy doesn’t just impact the individual living with it, it touches everyone around them. This episode provides insights, enrouragement, and support for those struggling with epilepsy’s “hidden” emotional and psychological effects.

Subtle Seizures, Big Impact: A Young Woman’s Personal Epilepsy Journey

35 min

In this episode of Seizing Life®, Skylar Swatt sharesher epilepsy journey. From a stroke that caused seizures at birth to the onset of “mini-seizures” when she was a child which eventually resulted in a tonic clonic seizure and an epilepsy diagnosis in her teens, Skylar details her journey and the mental health impacts of her diagnosis and treatment. Skylar Swatt’s story begins at birth, when she suffered astroke that caused 15 seizures in her first few hours of life. Though doctors were able to get the seizures under control, after several years of seizure freedom they returned but were mistakenly identified as muscle spasms in her jaw. Skylar recounts how these jaw twitches went undiagnosed throughoutchildhood, until she experienced her first grand mal (or tonic clonic) seizure at age 14. She and her family began to push for answers—initially facing dismissal and frustration within the healthcare system. Through persistence, Skylar eventually found a neurologist who listened, explained her conditionclearly, and helped her make sense of what her brain and body had been experiencing all along. Beyond seizure control, Skylar opens up about the emotionalside effects of anti-seizure medications, including anxiety and depression, and how epilepsy affected her education, social life, and major life transitions such as starting college and navigating adulthood. She also discusses the importance of self-advocacy, mental health support, routine, and finding compassionate care.

Welcome to Seizing Life, a podcast about epilepsy and those who live with it

1 min

Seizing Life® is a CURE Epilepsy podcast and videocast aiming to inspire empathy, offer helpful stories, and give hope as we search for a cure for epilepsy. Listen as neurologists, researchers, and those living with epilepsy share stories, insights, and advances in treatment and care with our host, Kelly Cervantes.

Living, Working, and Dating with Adult-Onset Epilepsy

36 min

Landis Wiedner shares her journey with adult-onset epilepsy after being diagnosed at the age of thirty-two. She describes how seizures impacted her life and work, explains how a stay in and epilepsy monitoring unit led to a life-changing medication change, and shares her experiences dating with epilepsy.

A Trailblazing Career in Epilepsy and Clinical Trials

29 min

Dr. Elinor Ben-Menachem, epileptologist, researcher and professor at Sweden’s University of Gothenburg, shares insights and experiences from her 40-plus years working with clinical trials and providing care to refractory epilepsy patients.

Epilepsy for Dummies: Your New Handbook for Better Understanding Epilepsy

30 min

Journalist Lauren Aguirre and Dr. Elizabeth Thiele, the authors of the recently published “Epilepsy for Dummies,” discuss their collaboration and explain why their perspectives as epilepsy patient/parent and provider were essential in creating a reliable resource for those living with epilepsy and those who love them.

On the Brink of Breakthrough: How an Arthritis Med Could Stop Seizures

54 min

Dr. Olivia Hoffman, post-doctoral researcher in Dr. Avtar Roopra’s lab at the University of Wisconsin-Madison, discusses one of the most exciting discoveries in epilepsy research in recent years, a repurposed drug that has shown remarkable promise in eliminating seizures and restoring cognition in mice.

Despite Medical Training, A Young Doctor’s Epilepsy Goes Undiagnosed for a Decade

33 min

This month on Seizing Life® Dr. Kelly Tyson shares her decade-long journey to an epilepsy diagnosis. Despite numerous visits to various medical experts through the years and majoring in neuroscience in college, Kelly was never referred to a neurologist, nor did she recognize the “episodes” she experienced as seizures. Kelly details how she managed these episodes through college, graduate school, and medical school, and reveals the surprising way that she came to realize she was having seizures.

Joey’s Song Musicians: Rocking for Epilepsy Research is Personal

47 min

This month Seizing Life® goes on location at the Joey’s Song Freezing Man Festival to speak with Kay Hanley and John Cowsill, two musicians with personal connections to epilepsy who participated in the multiday music festival to raise money for epilepsy research.

Overcoming Seizures to Pursue a Neuroscience Degree and Help Others Living with Epilepsy

29 min

This month we welcome Matthew Summerfield to the podcast. Matthew has lived with epilepsy since his first seizure at the age of eleven. Though he was advised early on not to tell anyone about his epilepsy, Matthew has refused to be held back by seizures, studying neurosceience as a college undergraduate, and now pursuing a PhD while working in an epilepsy research lab at the University of Iowa.

Post-Traumatic Epilepsy: What We Know and Where the Research is Going

28 min

This month on Seizing Life® we speak with Dr. Elisa Zanier of the Mario Negri Institute in Milan, Italy about the current state of research into Post-Traumatic Epilepsy (PTE) in the wake of a recent International Conference on PTE co-hosted by CURE Epilepsy.

The Sudden and Life-Altering Impact of Adult-Onset Epilepsy

34 min

This month on Seizing Life® Jon Tuteur shares his journey with adult-onset epilepsy. From his first seizure at age thirty, through his epilepsy diagnosis, treatment, and eventual brain surgery, Jon discuses the physical and emotional impacts of seizures, medications, diagnostic tests, and medical procedures in pursuit of controlling his epilepsy. He also tells us about his forthcoming book Seizing Today: Discovering Purpose and Authenticity in a Life Changing Diagnosis

Older Adults and Epilepsy: the Causes, the Signs, and the Treatments

28 min

Dr. Laura O’Dwyer joins us to talk about the fastest growing segment of people living with epilepsy in the United States – older adults. Dr. O’Dwyer explains why adults are more likely to develop epilepsy later in life, outlines the challenges of recognizing, diagnosing, and treating epilepsy in older adults, and provides valuable information for older adults living with epilepsy and their caregivers.

The Best of Seizing Life 2023

30 min

This week on Seizing Life®, we revisit several compelling conversations from the past year in our Best of Seizing Life 2023 compilation episode.

Regenerative Brain Cell Therapy: One Woman’s Journey to Seizure Freedom

26 min

This week on Seizing Life® Annette Adkins, who has lived with intractable epilepsy since 2014, discusses the impacts of epilepsy on her professional and personal life, and how it led her to participate in a clinical trial for a new procedure that has brought her seizure freedom.

Infantile Spasms: The Facts, The Research, and The Hope for the Future

30 min

This week on Seizing Life®, in recognition of Infantile Spasms Awareness Week (December 1st – 7th), we speak with epilepsy researcher Dr. Chris Dulla about infantile spasms – what we know, what recent research has revealed, and how current research may lead to better detection and treatments.

Epilepsy in Women: Challenges, Concerns, and Considerations

40 min

This week on Seizing Life® we speak with Dr. Elizabeth Gerard about impacts, challenges, and concerns specific to women living with epilepsy. From puberty to menstruation, contraception, pregnancy, and menopause, Dr. Gerard provides information and insights on managing epilepsy as a woman through all stages of life.

NYC Marathoner Achieves Seizure Control and Runs for Epilepsy Research

30 min

This week on Seizing Life® we speak with Peter Burpee who experienced absence epilepsy in childhood and tonic clonic seizures in his teen years, but has gained seizure control and will be running in the upcoming NYC Marathon to raise money for epilepsy research.

Infantile Spasms Diagnosis and Treatment Journey Inspires Children’s Book

28 min

This week on Seizing Life® Kate Kostolansky shares her daughter Charlotte’s infantile spasms diagnosis and treatment journey, and explains how these experiences inspired a children’s book designed to help newly-diagnosed families and those around them better understand infantile spasms.

An Extraordinary Life of Autism, Epilepsy, and Advocacy

34 min

This week on Seizing Life® we speak with Barbara D’Amora about the life of her son Nicholas, who lived with autism and epilepsy and became an active and inspirational advocate for the autistic community despite being nonverbal. Barbara recalls the early days of Nick’s life and how a program “unlocked” Nick, allowing him to communicate with the world around him and igniting a passion for advocacy that Nick pursued until his passing from a seizure earlier this year.

A Young Woman’s Journey with Jeavons Syndrome

26 min

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.

Comprehensive Epilepsy Centers: An Insider’s Guide

33 min

This week on Seizing Life® Dr. Dave Clarke gives us a thorough overview of the specialists and services available at comprehensive epilepsy centers and offers advice about when and how to access these centers.

Love, Marriage, and Epilepsy

32 min

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.

The Caregiver Journey: A Father’s Story

37 min

This week on Seizing Life®, father and therapist Bud Hager discusses being the caregiver to a young daughter with a rare and complex medical condition. Bud discusses the daily responsibilities and the overarching emotional journey of parenting a child with a rare disease, and how it has transformed his life in both tangible and philosophical ways.

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