TSC Talks! Alexis Minnaar, Living with TSC; Never A Dull Moment-A South African Perspective

In Part 1 of this two-part episode, Alexis Minnaar, an English and Geography teacher from South Africa, and young adult living with Tuberous Sclerosis Complex shares the process of coming to terms with having TSC and learning how to manage the condition herself. When she left home and entered college, living away from home for the first time and studying and working, she describes feeling overwhelmed with this realization "like I got hit with a ton of bricks". Her system for tracking manageable variables in several different journals is really interesting and a positive outcome of struggling hard to accept the monumental challenges TSC case management can present. At a time when most young adults are exploring the freedoms of independence, Alexis had to learn to completely avoid caffeine closely monitor her diet, minimize any alcohol consumption, avoid overexertion during exercise and pay attention to her stress levels. Starting off in a Montessori school, she learned to read and write and from quite an early age. The Montessori system, developed by an Italian woman who's daughter had epilepsy and uses a lot of repetition, was well suited to helping Alexis overcome some TSC related cognitive challenges. She also talks about being bullied at school for her facial manifestations of TSC, for eating "weird food" and coming home "black and blue". Eventually, her mother felt it necessary to home school Alexis and her younger siblings. She narrates eloquently several aspects of her homeschooling experience that prepared her well for passing the necessary testing to enter college. She also highlights how TSC is managed in South Africa, the need for more awareness and access to better treatment. In her blog, "Living with TSC; Never a Dull Moment" she gives more personal glimpses of her challenges and joys and wants to continue to utilize her lived experience to raise awareness and connect with others living with TSC in her home country and worldwide. Her blog titled, "Living with TSC; Never a Dull Moment" can be found at http://theycallmetsc.blogspot.com/. Quoting her blog headline, "Living with Tuberous Sclerosis Complex, may seem daunting, maybe even impossible. But it doesn't have to be... This my story of hope". Powerful, inspiring words from this articulate, brave, humorous and caring young woman. Stay tuned for Part 2!

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