TSC Talks! The Benefits of Community Connection, Turning the Tables on TSC with Emilie Peters

My guest, Emilie Peters, hailing from Oklahoma, is a Junior Leader with the TS Alliance, co-facilitator for the new TSC Young Adult Connect Group, and just received her Associates Degree from Tulsa Community College. She gives a gripping personal account of her experience with a Tuberous Sclerosis Complex diagnosis from awareness of having the condition in 8th grade to current day. She narrates some painful experiences dealing with seizures, including one particularly heart-wrenching experience during a high school softball game. She discusses many of her experiences, such as not being able to get a driver's license, trying to find adequate TSC support and a TS Clinic, living with frequent bouts of anxiety, medication side effects, switching medications to attempt to get seizure control and increasing feelings of isolation and depression. The impact of living with a chronic disease such as TSC, and not having a peer network of any kind, even feeling disconnected from her own family were the motivating factors behind getting involved in the TSC community, first through her parents and their connections, but then on her own by attending the World TSC Conference, Marching on Capitol Hill and launching the Facebook group. Today she is much more content and accepting of her diagnosis and feels as if making the connections in the community made a huge difference. She is in a relationship with a young man also affected by TSC whom she met at a TS Alliance event, has received her Associates Degree and is looking forward to getting a job, participating in and watching sporting events and living her life. My hat is off to this young lady for summoning the inner courage and bravery to risk vulnerability and seek connection and how that has transformed her entire life. (intro music by www.bensound.com)