Show notes
I had the pleasure of having Brielle Izabelle join myself and co-host, Brooke Alisha on the podcast to discuss her lived experience as a young adult living with Tuberous Sclerosis Complex. Brielle is from New Jersey, is a college student at Fairleigh Dickinson and just launched a YouTube channel. This is the description she includes on her YouTube channel, linked below: “hey everyone! My names brielle Isabelle and I would love if you could join the bbsquad! Here I hope to talk about my disease Tuberous Sclerosis and raise awareness! I also want to make my channel super personal with Q&A’s, make up videos , pranks and more. CATCH UP ON SOME VIDEOS LIKE COMMENT AND MOST IMPORTANTLY SUBSCRIBE AND SHARE!”
My co-host for this episode was Brooke Alisha, Brooke is our TSC Talks YouTube Vlogger and is an adult and parent living with TSC. She is also a TSC Advocate, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope and I was grateful to have her jump right in and contribute to this interview with her own insights and understanding of TSC related challenges and add another valuable perspective to our discussion.
As a parent of three offspring with TSC who has been through quite a sampling of the TSC experience in terms of encountering ranges of manifestations, treatments, surgeries, medications, and interfacing with systems of care, I am always learning what I don’t know about another’s personal experience, and grateful to gain yet another glimpse of how others navigate and come through their own personal crises and come to understand and put in place a framework for moving forward and accepting the diagnosis without letting it define them. This was yet one more “schooling” I received on the many colors and faces of this complicated diagnosis.
I am sharing some pertinent quotes that help illustrate the content we discussed. Brielle discussed her greatest challenges growing up with a TSC diagnosis, those being educational and mental health challenges. “You know, I've dealt with school situations, like bullying because of how intense it really was for me, I did struggle. But the school system that I was involved in, they were amazing. And I was able to be super successful in school. I went to my dream college, and education is the biggest way that this has impacted me. And now as an adult, or young adult, I think that it really affected me with my mental health, which is something that I had no idea it would. I think that since my whole life has been relatively stable, I didn't realize that okay, you know, there's other things that aren’t, which has been my mental health, anxiety and depression and things like that. So, I think my whole life, it's really just been my education. But now that I'm an adult, and I'm more in charge of my education, it's definitely my mental health and mental health awareness. So that's the biggest thing and it's affected me a lot to be honest with you”
Brooke also shared her perspective on what Brielle mentions, also tying in TAND, which stands for Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders; “I know like 80% of people deal with a mental illness and you know, sometimes you deal with it worse at different ages. I honestly didn't really pay attention to it when I was younger, because I didn't know, but watching my daughter struggle with the bullying and the IEP s and the learning and the therapists and all that stuff. It is very traumatic for someone to go through at any level. You talk very well, and you are very educated. Whoever has worked with you has done an amazing job. And I think that's incredible growth for you”
Brielle underwent brain surgery at age 8 and states, “So I think that brain surgery was one of those things where I was sort of like, this is happening,...
My co-host for this episode was Brooke Alisha, Brooke is our TSC Talks YouTube Vlogger and is an adult and parent living with TSC. She is also a TSC Advocate, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope and I was grateful to have her jump right in and contribute to this interview with her own insights and understanding of TSC related challenges and add another valuable perspective to our discussion.
As a parent of three offspring with TSC who has been through quite a sampling of the TSC experience in terms of encountering ranges of manifestations, treatments, surgeries, medications, and interfacing with systems of care, I am always learning what I don’t know about another’s personal experience, and grateful to gain yet another glimpse of how others navigate and come through their own personal crises and come to understand and put in place a framework for moving forward and accepting the diagnosis without letting it define them. This was yet one more “schooling” I received on the many colors and faces of this complicated diagnosis.
I am sharing some pertinent quotes that help illustrate the content we discussed. Brielle discussed her greatest challenges growing up with a TSC diagnosis, those being educational and mental health challenges. “You know, I've dealt with school situations, like bullying because of how intense it really was for me, I did struggle. But the school system that I was involved in, they were amazing. And I was able to be super successful in school. I went to my dream college, and education is the biggest way that this has impacted me. And now as an adult, or young adult, I think that it really affected me with my mental health, which is something that I had no idea it would. I think that since my whole life has been relatively stable, I didn't realize that okay, you know, there's other things that aren’t, which has been my mental health, anxiety and depression and things like that. So, I think my whole life, it's really just been my education. But now that I'm an adult, and I'm more in charge of my education, it's definitely my mental health and mental health awareness. So that's the biggest thing and it's affected me a lot to be honest with you”
Brooke also shared her perspective on what Brielle mentions, also tying in TAND, which stands for Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders; “I know like 80% of people deal with a mental illness and you know, sometimes you deal with it worse at different ages. I honestly didn't really pay attention to it when I was younger, because I didn't know, but watching my daughter struggle with the bullying and the IEP s and the learning and the therapists and all that stuff. It is very traumatic for someone to go through at any level. You talk very well, and you are very educated. Whoever has worked with you has done an amazing job. And I think that's incredible growth for you”
Brielle underwent brain surgery at age 8 and states, “So I think that brain surgery was one of those things where I was sort of like, this is happening,...
