Second Annual “Blogging for TSC Awareness Month” Day 23

by guest blogger Kate Carter  (Ann Arbor, Michigan)

I was diagnosed with tuberous sclerosis back when I was 2 ½ years old. I am now approaching my 22nd birthday. So, I have lived with TSC as long as I can remember but I haven’t let that stop me. As far as we know there is no genetic link so it’s just a mutation that happened to pick me. I have seen many things through my times at hospitals for annual visits. I remember being in one of the early MRI machines and watching the improvements in research and other medical developments. Sure, things got tough at times but I always maintained a positive attitude. I am very luck to have a “mild” case of Tuberous Sclerosis but still very affected. If it weren’t for such an active lifestyle and healthy diet, I wouldn’t be this “well” off. But through it all, there are still challenges. In my 8th grade year I suffered a grand mal seizure that lasted 90 minutes. I came away with no brain damage but still managed to get the flu. Somewhere up there someone is looking out for me. I haven’t had a specifically labeled seizure event since then. I have things that we are calling “spells” because they aren’t sure. It’s a mix of anxiety attacks and seizures but not bad enough to make me unconscious. It is very frustrating to not know what these things are and know how to treat them. I often think though, my life could be so much worse and I know all us TSC suffers all have things we don’t understand. The world doesn’t understand. I hope that continues to change.

Of all the challenges, my learning disability has been the most difficult thing for me in terms of this disease. Some days I would remember things and
others I would draw a complete blank. I can’t thank my teachers, professors, coaches, and parents for helping me thus far in life. Since I just graduated from college, it is time to begin the next chapter in life and to learn to live on my own. Throughout my life I have never felt like I wasn’t “normal.” I like to think that God has given me other gifts to make up for me having such a rare disease. I have excelled athletically. In high school I was nationally ranked in the 800m by my senior year and all-American on relay teams. All of that lead to the wonderful scholarship to my respected university, my coach had no idea what my disease was but took a chance on me and I can’t thank her enough. Just because I have a certain disease doesn’t mean I can’t do things like my peers. My parents have been by my side from day 1 but have to slowly pull back because I’m aging and have to take on my own responsibilities. I am both excited and nervous for the leeway. Wondering what will happen next, but I figure if I’ve made it this far. I’m sure I’ll be just fine.

To all those that are younger than me and or parents, I suggest if able get involved in sports. That has kept me healthy in more ways then one and always looks at life positively. Sure times will get tough and you will have breakdowns but just know there is always a tomorrow and another challenge to master. Always surprise. Let’s make the world aware of us.