In Part 2 with Alexis Minnaar, we go into further detail on the realities of growing up with TSC. She shares more about relationships, mentioning the fact that she has TSC with potential partners, and how this news was received. Meeting her husband, dealing with people's questions related to facial manifestations over the years, how others react when she shares information on having TSC, and how important finding common ground has been with other individuals and/or families dealing with epilepsy and/or TSC. We discuss her attendance at "TSC Indaba" in November 2018, an informal TSC gathering of families and individuals who live with Tuberous Sclerosis Complex coordinated in part by Professor Petrus de Vries, the TAND expert from South Africa and how powerful it is to connect with others in her country dealing with similar issues. Alexis shares her vision for a comprehensive program for those living with epilepsy and TSC , the need to reach young people, teenagers and offer support, validation and hope. She emphasizes throughout, that while it's incredibly difficult to come to terms with acceptance of having a condition such as TSC that impacts every area of her life, it is possible to manage and have a good quality of life.
Despite some teenage rebellion which she outlines, she has fully come around to acceptance;"What got through to me, I think was the idea that you can have fun, but in moderation". Alexis wants all to know that despite the often grim information given to families upon receiving a diagnosis, not to let any of this information be the final word. "I think we need to try and come together and put up a system that educates teenagers, in particular, on their condition as well as parents....where you say, your child is not in primary school anymore- they are trying to find their own identity. Yes, how you can help them, give them these alternative safe options, but don't control" . A brilliant take away from this young lady who is passionate about using her voice to affect change and raise awareness in South Africa and beyond!