About TSC (Tuberous Sclerosis Complex)

TSC (Tuberous sclerosis complex) is a genetic disorder that can only be given to another through birth. It is one of those disorders that cannot be cured and can come in many forms.

This disorder is something I’ve been living with my whole life, and it’s very likely I will die with it as well. I was diagnosed at 3 months of age, and I’ve had to take medicines of different kinds.

There are two types of TSC. There’s TSC 1 and 2. Usually, from what I’ve heard, if you have TSC 2, things are a little more complicated. I, on the other hand, have TSC 1, and things are very mild, but there are people that don’t get so lucky.

This disorder comes with many different symptoms, some severe, and some not so much. Sometimes people can get little white patches on the skin called “ash leaves.” I have about two, but the question of there being more has come up after being in the sun for a certain amount of time.

One common symptom that comes with most cases of this disorder is seizures. There are different kinds of seizures that can happen, but one common kind of seizure that most people may experience is a “Grand-mal seizure.”

This kind of seizure is one of the most severe kinds, because with this kind what usually happens is you may uncontrollably fall to the ground, and flinch and shake, and usually the person experiencing this is unable to communicate with the person looking after them.

Another thing most people will get are tumors. The size of these pesky bumps vary from person to person. Some people will have many in various places of their bodies, some will have very few, and it’s possible that some don’t even get this symptom, but unfortunately most of the time, they do.

I have only two tumors, one in my left eye and one in the brain at the very back. When you deal with something like this, doctors will want to check on you more than once every 2 years or less.

The tumor in my left eye has not grown much, but it affects the organ that is in control of my eyesight, so if you were to cover my right eye, I would still be able to see, but it would be a little blurry.

This disorder doesn’t just come with symptoms that are hidden within the body; there are also symptoms that can be seen on the face, and you will sometimes notice it in the person's behavior as well.

Sometimes, Autism can be involved, and it can mean many different things for the individual. No speech, sensitivity to sounds, and some can dislike being around people a little as well.

In my case, however, I never dealt with anything too, too serious. I do however have to go to the doctor a couple times per year. Everything I have explained so far, always depends on how severe the case is; and other things.

Most of the time, this disorder is known to be genetic, as I’ve already said, but what about when you are the only person in your family who has it? That’s when you wonder: how did I get this then?

I try not to let it affect how I’m living my life now, but sometimes it is tough. It can affect different things I want to do, like living on my own, getting a job, and schooling. Why schooling? Well, some people get a learning disability with this, and this is something I happen to deal with.

While I was in school, things changed over time, and I remember just hanging around in a room where most of the people there had their own problems. But even though I also had my own issues, I didn’t quite feel like I belonged; because I was not like the others that were there.

I don’t know every little detail about this disorder, because some cases are more severe than my own. But I know enough to say that even though this is something I am stuck with forever, I am very lucky, and it doesn’t define who I am, because I am more than just a girl with TSC.