About Me

My name is Jessica Kay. I am in my early twenties and I have Tuberous Sclerosis, a disease that causes tumors (called tubers) on my brain and other parts of my body. Because of this I have challenges which I will share with you.

I was born with Tuberous Sclerosis. I have learning delays and I had speech delays when I was younger. I had seizures but I have been seizure-free for a long time now because of several brain surgeries and anti-seizure medications I take.

Right now my condition is pretty stable. I just have to get MRIs now and then for my brain and my spine. I have had Chiara decompression surgery on my brain/spine twice. So the neurosurgeon checks my spine every year to make sure it is okay. The reason why they do MRIs on my brain is because I have tubers on my brain.

When I was a baby the doctor took out one side of my brain because it had tubers on it. So I have been living with one side of my brain in me. I proved the doctors wrong because I can walk and talk and the doctors said to my parents that I may not be able to walk or talk back then. But I have proved them wrong. My vision is very poor because I have a visual field cut because of the brain surgery when I was a baby. My physical sensation has decreased because of the Chiara malformation in my brain. Over the years I have had to learn to adapt to all of these problems.

I hope my blog helps you with your challenges.