Schizencephaly with Glen from California

Send us Fan MailWhat is it like to live with multiple rare brain malformations and severe epilepsy?In this episode of Rare Connection, Joanna speaks with Glenn Schallman, who has been diagnosed with three extremely rare neurological conditions:SchizencephalyPolymicrogyriaHypothalamic HamartomaFor more than fifteen years Glenn lived with 10–20 seizures every day, severe head pain, and neurological symptoms that dramatically impacted his life.Schizencephaly is an ultra-rare brain malformation that occurs during fetal development. It creates abnormal clefts in the brain, which can lead to symptoms such as:frequent seizures or epilepsymuscle weakness or paralysis on one side of the bodydevelopmental delaysspeech and communication difficultiescoordination and balance problemslearning disabilitiesBecause these symptoms can overlap with many neurological disorders, people often spend years searching for answers before receiving a diagnosis.Glenn’s case was especially complex because he also lives with polymicrogyria, a disorder that affects how the brain’s cortex folds, and hypothalamic hamartoma, a rare lesion that can trigger severe epilepsy.For years doctors believed his condition was inoperable.Everything changed in 2017 when neurosurgeon Dr. Michael Nakaji at the Barrow Neurological Institute performed a complex surgery to partially remove and disconnect the hamartoma. The procedure reduced Glenn’s seizures from dozens per day to just a few per week.Another extraordinary part of Glenn’s journey is his seizure-alert cat, Blake. Blake learned to detect Glenn’s seizures and wake him during dangerous episodes, and his lifesaving actions earned him the 2016 Humane Award from the ASPCA.Today Glenn continues to advocate for epilepsy awareness and rare brain disorders, sharing hope with others navigating complex neurological conditions.Topics Discussed• schizencephaly and brain malformations • epilepsy and frequent seizures • polymicrogyria and cortical development disorders • hypothalamic hamartoma • seizure alert animals • rare disease advocacy and resilienceConnect with Rare ConnectionFollow Rare Connection on Facebook, X, and LinkedIn.Video versions of the podcast are available on Joanna’s YouTube channel Rare Chef.Audio listeners can use the Send Me a Text link in the show notes to share feedback or ask questions.Suicide Prevention ResourcesIf you or someone you know is struggling, help is available.United States: Call or text 988 for the Suicide and Crisis Lifeline.Support the show