Episode 12 - Access, Accommodations, and Advocacy

Welcome to Episode 12 of "Episodes," the official podcast of the Cyclic Vomiting Syndrome Association (CVSA). A trusted source for patient stories, medical insight, and meaningful advocacy on all things Cyclic Vomiting Syndrome (CVS).Join our host Blynda and guest Sarah Arndt on this episode as they discuss similarities in CVS and migraine disorders. Sarah is the Growth and Outreach Manager at Migraine at School associated with the Danielle Byron Henry Migraine Foundation. Listen in on discussions on lived experiences, connection, hope, and get access to resources for both conditions.For Resources Discussed in this Episode and More:https://www.cvsaonline.org/https://www.migraineatschool.org/Direct resource:PedMAP - https://www.migraineatschool.org/health-care-providersCE - https://www.migraineatschool.org/continuing-educationInspired Card - https://www.cvsaonline.org/for-patients/getting-through-school/Support the show

Welcome to Episode 11 of "Episodes," the official podcast of the Cyclic Vomiting Syndrome Association (CVSA). A trusted source for patient stories, medical insight, and meaningful advocacy on all things Cyclic Vomiting Syndrome (CVS).Join our host Blynda and guest Kylie Gagan on this episode as they discuss migraine disorders and how CVS relates to them. Kylie is the Director of Education at Association of Migraine Disorders (AMD) and is a graduate of the Master of Headache Disorders program at the University of Copenhagen. AMD and CVSA have become allied partners working together to update information on CVS in AMD's comorbidity library. Listen to the conversation and learn why this collaboration matters. Get involved in helping to bolster gathering critical data and insights from individuals with similar experiences with various head and neck symptoms, to potentially help others on their journey in pursuit of treatment.For Resources Discussed in this Episode and More:cvsaonline.org/migrainedisorders.org/HEADS Registry:migrainedisorders.org/heads-registry/Migraine and CVS:migrainedisorders.org/cyclic-vomiting-syndrome/Shades For Migraine:shadesformigraine.org/Support the show here and more: cvsaonline.org/get-involved/donate-to-cvsa/Support the show

Welcome to Episode 10 of "Episodes," the official podcast of the Cyclic Vomiting Syndrome Association (CVSA). A trusted source for patient stories, medical insight, and meaningful advocacy on all things Cyclic Vomiting Syndrome (CVS).Join our hosts on this episode as they discuss experiences and CVS specific resources for school. Listen in to their shared experiences to gain insight in to how schooling can be navigated from both a patient and parent perspective. For Resources Discussed in this Episode Please See Below: https://www.cvsaonline.org/  Link to the Schooling Resources: https://www.cvsaonline.org/for-patients/getting-through-school/Support the show here and more: https://www.cvsaonline.org/get-involved/donate-to-cvsa/Support the show

Welcome to Episode 9 of "Episodes," the official podcast of the Cyclic Vomiting Syndrome Association (CVSA). A trusted source for patient stories, medical insight, and meaningful advocacy on all things Cyclic Vomiting Syndrome (CVS).Join our hosts on this episode as they explore and discuss experiences they learned about traveling with CVS. See how considering triggers, sleep disruption, staying hydrated, nutrition, and more can impact the way you travel with CVS. Learn from the experience and insight from the perspective of a parent and patient with CVS.For Resources Discussed in this Episode Please See Below: https://www.cvsaonline.org/  Link to the Treatment Guidelines: https://www.cvsaonline.org/for-health-providers/treatment-guidelines/ Support the show here and more: https://www.cvsaonline.org/get-involved/donate-to-cvsa/Support the show

Welcome to Episode 8 of "Episodes," the official podcast of the Cyclic Vomiting Syndrome Association (CVSA). A trusted source for patient stories, medical insight, and meaningful advocacy on all things Cyclic Vomiting Syndrome (CVS). Join us on this episode as we explore and discuss the 2025 Pediatric CVS Treatment Guidelines with Dr. Katja Karrento. She is a Professor of Pediatric Gastroenterology and Director of Research and Cyclic Vomiting Syndrome Programs at the Medical College of Wisconsin and Children's Wisconsin. A leading expert in pediatric CVS, Dr. Karrento was instrumental in developing the first-ever dedicated treatment guidelines for CVS in children. In this conversation, she walks us through this landmark milestone in CVS care, what makes these guidelines different from prior consensus statements, and how they were designed to be accessible and actionable for clinicians caring for pediatric patients with CVS. For Resources Discussed in this Episode Please See Below: https://www.cvsaonline.org/  Link to the Treatment Guidelines: https://www.cvsaonline.org/for-health-providers/treatment-guidelines/ Support the show here and more: https://www.cvsaonline.org/get-involved/donate-to-cvsa/Support the show

Welcome to Episode 7 of “Episodes,” the official podcast of the Cyclic Vomiting Syndrome Association (CVSA). A trusted source for patient stories, medical insight, and meaningful advocacy on all things Cyclic Vomiting Syndrome (CVS).In this episode, host Blynda Killian (CVSA) talks with Nina Hellebakken Hagen (CVSA Nordic Leader and Norwegian contact person) about the often unseen mental health toll of living with Cyclic Vomiting Syndrome. Together, they explore the emotional impact of navigating a condition that is frequently misunderstood, dismissed, or not believed, and what that can mean for patients who are already enduring significant physical suffering.As the conversation unfolds, they reflect on how validation, awareness, and connection can play a powerful role in changing that experience. With International CVS Awareness Day (March 5th) just behind us, they consider what could happen if each of us chose to take one small action.Nina also shares how her own determination to better understand CVS led her to build CVSA Nordic, helping create pathways for patients and families to access reliable information and support more easily. A few minutes of awareness could help someone find a diagnosis, access care, or feel seen in a way they may never have before.For Resources and More Visit:https://www.cvsaonline.org/https://cvsanordic.net/Support the show

In this special Podcasthon episode, we share the story behind the Cyclic Vomiting Syndrome Association (CVSA) and how a small group of families searching for answers helped build a global network supporting patients, caregivers, and medical professionals.Through our host, Blynda Killian’s personal caregiving journey, we explore the challenges of the diagnostic process, the importance of finding organizations like CVSA, and the role patient advocacy plays in improving awareness and care.Learn more about CVS at cvsaonline.orgSupport the show

Welcome to Episode 5 of “Episodes,” the official podcast of the Cyclic Vomiting Syndrome Association (CVSA). A trusted source for patient stories, medical insight, and meaningful advocacy on all things Cyclic Vomiting Syndrome (CVS).In this episode, host Blynda Killian (CVSA) talks to Robin Dover (CVSA UK) about how their own lived experiences with cyclic vomiting syndrome turned personal pain into motivation to make a change. With International CVS Awareness Day (March 5th) just around the corner, they discuss the potential impact if just one person took one action to make a difference.From sharing a brochure to lighting up your home or garden, see how the smallest act, taking just minutes, can create a ripple effect that can lead to someone else finding a diagnosis, a treatment, or just finding comfort in knowing that they aren't alone.For Resources and More Visit:https://www.cvsaonline.org/https://cvsa.org.uk/Support the show

Welcome to Episode 4 of “Episodes,” the official podcast of the Cyclic Vomiting Syndrome Association (CVSA). A trusted source for patient stories, medical insight, and meaningful advocacy on all things Cyclic Vomiting Syndrome (CVS).On this episode of “Episodes”, we sit down with our host, Blynda Killian, President of the Cyclic Vomiting Syndrome Association, and her on-again, off-again co-host and co-developer of the podcast her son Jacen. Together, they share how their personal journeys with cyclic vomiting syndrome have shaped very different perspectives on living with, caring for, and advocating around CVS.Through an honest conversation rooted in lived experience, they explore how those differences have influenced their ideas surrounding the podcast, understanding of the condition, the gaps in care, and the importance of listening to diverse CVS voices. By sharing their stories and viewpoints, they highlight how lived experience can deepen awareness, foster understanding, and help others impacted by CVS feel seen, informed, and less alone.For Resources and More Visit: https://www.cvsaonline.org/Support the show

Welcome to Episode 3 of “Episodes,” the official podcast of the Cyclic Vomiting Syndrome Association (CVSA). A trusted source for patient stories, medical insight, and meaningful advocacy on all things Cyclic Vomiting Syndrome (CVS).Join us on this episode as we explore the CVS Action Plan withDr. Patrick Reeves. He’s a triple Board Certified General Pediatrician, an Obesity Medicine Specialist, and a Pediatric Gastroenterologist with advanced care in the management of children with medical complexity, tube feeding needs and rare gastrointestinal disorders. Dr. Patrick Reeves is an associate professor of pediatrics at the Long School of Medicine at UT Health San Antonio, Texas and the Uniformed Services University of the Health Sciences in Bethesda, Maryland. He is also an associate professor of military medicine at Texas A&M University Health Science Center in College Station, Texas. Dr. Reeves is also the CEO of his consulting firm, Wild Child Medicine, PLLC.For Resources Discussed in this Video Please See Below: https://www.cvsaonline.org/https://sites.google.com/view/clinical-action-plans/home-clinical-action-planshttps://sites.google.com/view/wildchildmedicine/homeSupport the show