ABOUT LE'KESHIA

My name is Le’Keshia C. Bell. I am 39 years old and was diagnosed with Tuberous Sclerosis Complex sometime as an in my infancy or as a toddler. I was told that I had a seizure when I was 7 years old, but I don’t ever remember having a seizure at 7, and there’s n way to know since the person that can tell me when I was diagnosed or when if the seizure happened is my mother and she passed decades ago.

What I know for sure is that in the last 30 plus years I have not had any seizures. I’ve had minor shakes or what I call tremors, what I suspect are spasms but not sure. That’s a question for my Neurologist.

I was in Special Ed up until I graduated from 8th grade. I was supposed to be taken out before then, but my mother passed away before that could happen. I was on phenobarbital for several years up until 16 or 18 years old (depending on who you ask…there’s a debate about that in my family).

I never really knew much about my diagnosis and was never really educated on it by anyone. Throughout my teenage years, 20’s. and early 30’s I don’t remember having many symptoms from my condition except headaches, although I really didn’t know what to look for. It wasn’t until about 6yrs ago I began looking for a new neurologist (I had not seen one since my mid 20’s and that experience was horrible) and doing my own research into my diagnosis. The last few years have been a struggle with my condition and professional life.

This blog is about my journey with Tuberous Sclerosis Complex, what I’m learning about my condition, my day to day struggles, and how I’m managing. There aren’t many resources out there with my condition in my area or many others from what I’ve seen and heard, My hope is that this blog helps you just as much as it helps me.