Weekly podcasts with guests from across the spectrum of Tuberous Sclerosis Complex (TSC), focused on finding ways to harness the narrative of our mutual life experiences thus far with Tuberous Sclerosis Complex. My aim is to have honest discussions of what exactly it is like for those diagnosed, their inner experience and how that coincides with the inner experience of the caregiver/parent. By listening to each other in the form of a conversational podcast, we might be able to loosen the grip of fear that can accompany living with the uncertainty TSC often involves, finding that our burdens are lighter. It also is a great way to tease out valuable information for the medical and scientific community on the patient and caregiver experience, our frustrations with the system, the medical community the mental health community.
Episode 9, Episode 8, explore in depth some of the behavioral and mental health issues arising in conjunction with TSC. I’m reposting some of the info I shared in my last blog regarding TSC and Mental Health and linking with my podcast where I interview TSC Mom, Dorina Leslie. Dorina narrates the intensity of finding out her son with TSC had considered putting a rope around his own neck. The weight of discussing his inner turmoil with anyone, was more than he could bear at that moment. Thankfully, Justin was able to overcome his fears and open up to his mom and thankfully, she was able to act.
The neuropsychiatric aspects of a disease such as Tuberous Sclerosis Complex can be crippling. What is TSC? Click here. After much-lived experience in dealing with TSC related mental health issues, also known as neuropsychiatric issues, as well as my own refractory and integrated mental health issues. I am quite familiar, almost comfortable discussing. Due to the nature of TSC manifestations, particularly brain manifestations, these issues are almost unavoidable. In fact, I heard it tossed out by several different specialists, of the MD variety, that 90% of those diagnosed with TS, will be affected over the course of their lifetime by some level of neuropsychiatric issues.
Please give it a listen and follow for bi weekly podcasts with guests from across the spectrum of TSC.