fbpx

Episode #75 - A Brave Little Girl’s Journey with Sturge-Weber Syndrome featuring Cindy and Elvin Angulo

Seizing Life > A Brave Little Girl’s Journey with Sturge-Weber Syndrome
Share
Subscribe

For many people living with epilepsy, seizures are just one of the challenges. Often an epilepsy diagnosis comes with other medical issues. While rare, one such condition can be Sturge-Weber, a vascular disorder in which blood vessels in the brain form abnormally, resulting in a facial birthmark (referred to as a port-wine stain), eye abnormalities such as glaucoma, and often seizures. As with epilepsy, the specific symptoms and impacts of Sturge-Weber can vary greatly from person to person.

Today on Seizing Life®, we speak with Cindy and Elvin Angulo about their daughter Vera’s diagnosis and their family’s journey with Sturge-Weber Syndrome. Diagnosed with Sturge-Weber shortly after birth, Vera began experiencing seizures when she was 3 months old. The Angulos discuss the impacts of Sturge-Weber, explain the connection between it and epilepsy, and detail the treatments that Vera has undergone for both conditions. Additionally, Cindy and Elvin offer insights on the value of community and being public with their family’s journey, and provide advice for others who may be navigating a rare disease.

If you’ve seen CURE Epilepsy’s “Unite to Cure Epilepsy” virtual benefit, you are probably familiar with this amazing family, and you will want to hear the latest chapter of their journey. If you haven’t heard the Angulo’s story, we encourage you to listen now and be inspired by this brave little girl.

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

    A Brave Little Girl’s Journey with Sturge-Weber Syndrome

    Related Episodes

    featured episode
    FamilyLiving with Epilepsy
    January 11, 2023

    #107 Unleashing Your Inner Mama Bear

    Guest: Kate Neale Cooper

    Epilepsy advocate Kate Neale Cooper and host Kelly Cervantes share their experiences parenting children with epilepsy and offer advice on advocating for your child’s epilepsy care.

    featured episode
    Epilepsy and AdvocacyFamilyLiving with Epilepsy
    December 28, 2022

    #106 Kids Ask Docs the Darndest Things About Epilepsy

    Guest: Dr. Kristen Park and Dr. Adam Numis

    This week on Seizing Life® kids ask pediatric neurologists about epilepsy. Dr. Kristen Park of Children’s Hospital of Colorado and Dr. Adam Numis of the UCSF Benioff Children’s Hospital answer questions from kids on a wide variety of topics related to epilepsy.

    featured episode
    FamilyLiving with Epilepsy
    December 14, 2022

    #105 Managing Epilepsy with the Stress of The Holidays

    Guest: Dr. Eva Alden

    This week on Seizing Life®  Neuropsychologist Eva Alden joins us to offer advice for those with epilepsy and their caregivers for coping with stress, anxiety, depression, and travel during the holidays.