Living With a Rare Brain Disease, Brain Surgery, and Becoming an Advocate with Linda Fuchser
What would you do if a routine trip to the emergency room revealed a rare brain disease you never knew you had? In this episode of Curveballs and Lemonade, Judy Kogan sits down with Linda Fuchser to share her incredible journey living with cerebral cavernous malformation (CCM), a rare neurological disease that causes abnormal blood vessels in the brain, brainstem, and spinal cord. Linda discusses her accidental diagnosis after a brain bleed, undergoing brain surgery, discovering she carries the common Hispanic genetic mutation associated with CCM1, and learning to navigate life with multiple lesions throughout her brain and brainstem. She opens up about recovery, depression, cognitive challenges, family dynamics, and the uncertainty that comes with living with a rare disease. Most importantly, Linda shares how she transformed her experience into purpose by becoming an advocate for the Alliance to Cure Cavernous Malformation, helping patients and families find support, education, and hope. This powerful conversation explores resilience, advocacy, rare disease awareness, brain health, patient empowerment, and finding purpose through adversity. If you or someone you love has been affected by a rare disease, brain injury, neurological condition, or chronic illness, this episode is filled with valuable insight and inspiration. New episodes drop every Thursday. Follow us on social media: Instagram: @Curveballsandlemonade Facebook: Curveballs and Lemonade TikTok: https://www.tiktok.com/@curveballsandlemonade YouTube: https://www.youtube.com/@CurveballsandLemonade Recorded and produced by Command Creative Studios: https://www.commandcreativestudios.com/ Engineered by Robert Altschuler. #CurveballsAndLemonade #RareDisease #BrainSurgery #CCM #PatientAdvocate #Resilience
