“It’s important to stay connected” Daniel is living with Tuberous Sclerosis Complex (TSC)

About this episode

Daniel shares his experiences living with Tuberous Sclerosis Complex and the importance of community support.

Seizures, sleepless nights, and mysterious white patches on his skin marked the beginning of Daniel’s journey with Tuberous Sclerosis Complex (TSC). Diagnosed at age 6, Daniel faced a childhood filled with MRIs, EEGs, and specialist visits, often requiring cross-country travel for coordinated care. In this moving episode of On Rare, David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Senior Director of Patient Advocacy at BridgeBio Gene Therapy, speak with Daniel, a 31-year-old living in Seattle, about growing up with TSC, the emotional toll of visible symptoms, and the stigma he faced from peers. He reflects on the cognitive and mood impacts of TSC, including OCD and outbursts, and how he often kept to himself to feel more accepted. Today, Daniel is an active advocate in the TSC community, emphasizing the importance of connection, representation, and finding support among those with shared experiences. As he puts it, “You have to find your people.” Che-Wei Chang, Principal Scientist at BridgeBio, presents a medical overview of Tuberous Sclerosis Complex (TSC), a rare genetic disorder marked by seizures and benign tumors throughout the body. TSC results from a…

People in this episode

Hosts: David Rintell, Mandy Rohrig

Guest: Daniel

Topics covered

• Tuberous Sclerosis Complex
• patient advocacy
• mental health
• genetic disorders
• community support

Keywords

• Tuberous Sclerosis Complex
• TSC
• seizures
• patient advocacy
• mental health
• genetic disorder
• community

Mentioned in this episode

Organizations: BridgeBio, BridgeBio Gene Therapy

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