TSC Talks; "No Young Adult with TSC Fights Alone", with TS Alliance Junior Leader & Young Adult Advocate, Brianna Johnson
Apr 13, 2019 ·
25m 59s
My guest Briana Johnson is 21 years old and lives in Scottsdale Arizona. She'll be graduating this month from Grand Canyon University with a bachelors degree in marketing. Over the...
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My guest Briana Johnson is 21 years old and lives in Scottsdale Arizona. She'll be graduating this month from Grand Canyon University with a bachelors degree in marketing. Over the past few months, she had the opportunity to be a national Junior Leader for the TS Alliance and represent Arizona advocating in DC this past March. She was diagnosed with Tuberous Sclerosis Complex at age 3, initially with skin symptoms. Brianna discusses the challenges related to transitioning to adult care, kidney issues and surgery, and how the Mayo Clinic created a clinic based on their experience with Brianna! We touch on her go-to coping mechanisms, humor and sarcasm, transitioning to college and managing her medical needs, her experience as an advocate representing Arizona at the March on Capitol Hill and the exciting new Facebook group she helped create for young adults with TSC to be a safe space for other young adults with TSC (age 16-24) to share their stories, to make connections and discuss aspects of dealing with the disease and provide peer support to one another, and to share resources. "Our goal is to make sure no young adult with TSC has to face this fight alone" Thanks Briana! (music credit: www.woodywoodworth.com "peace like a river")
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| Author | Jill Woodworth |
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