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.
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