TSC Talks! Part 2; Are You Listening? "This is Who I Am & This Is What Our Family Is" with Cecilia Pratt
TSC Talks!23 Jul 2019

TSC Talks! Part 2; Are You Listening? "This is Who I Am & This Is What Our Family Is" with Cecilia Pratt

In Part 2, Cecilia talks about coping, working out, overcoming a food addiction, feeling like everything is on her shoulders and dealing with burn out. She also discusses getting unsolicited advice, dealing with SSI uncertainties, pharmacy issues and her deep concern for her African American son with challenging TAND behavior issues. "We all come in different shapes & colors" Yet she shares how multiracial issues can be even more challenging when managing a TSC diagnosis. Despite it all, her faith has been a refuge and her unwavering determination to help her son and family are evident throughout; "I try to look at the bigger picture. At the end of the day, it's like, this is who I am. This is what our family is, and, you know, you fight harder." https://tsctalks.com

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Episoder(155)

TSC Talks 3.0 (not) Research ~ In the Stone Chamber

TSC Talks 3.0 (not) Research ~ In the Stone Chamber

Taking a break from the harsh closed loops and hunkering down in dis stone chamber to give a little freestyle riff for this episode from the stone chamberno links except go watch the video. the audio ...

6 Mai 3min

TSC Talks 3.0 Research~Episode 10

TSC Talks 3.0 Research~Episode 10

I bust through the third wall or whatevs in Episode 10 of TSC Talks 3.0 Research. Dropped the whiteboard til the end. Summed up the 9 episodes and added a bit on the end about CPTSD, TAND and the fact...

29 Apr 35min

TSC Talks 3.0 Research~Episode 9

TSC Talks 3.0 Research~Episode 9

In this episode, I get into mitigation strategies related to the increasing reliance on tech with the arrival of 6G particularly for those living with a chronic and or rare disease that is on multiple...

22 Apr 36min

TSC Talks 3.0 Research~Episode 8

TSC Talks 3.0 Research~Episode 8

Episode 8 of TSC Talks 3.0 Research... continuing on with the extensive history of the rare disease Tuberous Sclerosis Complex, the set up for data harvesting and gene editing and the inevitability of...

15 Apr 30min

TSC Talks 3.0 Research~Episode 7

TSC Talks 3.0 Research~Episode 7

The history of Tuberous Sclerosis Complex.they're juicing it.Some queries related to the complexity of epigenetic variables and the overlords decision to focus on genetics only for the sake of "simpli...

8 Apr 33min

TSC Talks 3.0 Research~Episode 6

TSC Talks 3.0 Research~Episode 6

In Episode 6 of TSC Talks Research 3.0, I finish up the discussion of CRISPR and TSC and the trajectory, I get into cannabis and the way they've deglimmered exploration of consciousness for those with...

1 Apr 32min

TSC Talks 3.0 Research~Episode 5

TSC Talks 3.0 Research~Episode 5

In this episode I share information on the risks and side effects of CRISPR for individuals with TSC and in general as well as go into how those affected with TSC are "test bunnies" for much of this n...

25 Mar 28min

TSC Talks 3.0 Research~Episode 4

TSC Talks 3.0 Research~Episode 4

TSC Talks 3.0 Research, Episode 4Here's my ongoing convo with AI delving into the funding behind rare disease research, non profits and how there are vested interests in continuing to bypass the full ...

18 Mar 30min

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