Hi! I’m Jill Woodworth. Human being, Writer, Podcaster. Chronicler of being human. Case manager of 5 souls, 3 of whom have Tuberous Sclerosis Complex, each with varying effect. TSC causes benign tumors to grow in the organs of the body. There is no cure but there are diverse ways of managing care. Just getting by can be a daily challenge. That’s why I started TSC Talks. TSC exposes the schisms within our care systems. Existing with and/or case management of this condition requires treatment and service from one or more of these systems. Medical and mental & behavioral health systems, social services, pharmaceutical, and insurance industries. To name a few. Those with TSC and their families are often at the mercy of the disconnects within these outdated systems of care. Their fractured understanding of managing those with complicated conditions requires massive amounts of integration and communication to allow for those affected and their loved ones to have medical and psychological stability and an adequate quality of life.
I have raised 3 children with TSC. People with TSC can be mildly to severely impacted. Regardless, managing the aspects of Intellectual Disability and Autism presents significant challenges as a human being, parent, caregiver, or sibling. You must apply complicating labels to your loved ones in order to gain access to services and supports. I understand how much you need to know… and do… everyday. It’s overwhelming. TSC Talks is here to inform you about TSC and related issues. It provides individuals with TSC and their families with a public voice. It is also a forum for medical professionals, service providers, and product developers to tell the world about new innovations, and to connect with their audience. TSC is all of us. Everyone has challenges beyond comprehension. The answers from those “in the know” have become increasingly lacking. Our goal is not to compare or compete, but to collaborate. We can find sensible solutions to these problems not just for those with TSC. Extreme or unexpected circumstances can place any of us at the margins of society.
If you are part of my world, which is everyone willing to take an honest look at their lives and discuss how the direst and desperate of situations often led to the most understanding and personal growth and compassion plus an inner motivation to work toward social good, then join my network! Let me know if you have a story to tell or if you need help to connect with this growing market. Contact me on https://www.linkedin.com/in/jill-woodworth-7188b893/ or drop me a note on https://tsctalks.com/
