Tuberous Sclerosis Complex

What is TSC?

Tuberous Sclerosis Complex is a genetic disease that can be either passed on or randomly occurring. It is present in about 1 in 6000 people. The effects of the disease vary widely. It can cause tumors to grow uninhibited in the body. It affects the eyes, heart, lungs, brain, kidneys, and skin.  TS is the leading genetic cause of autism.

How does it effect Emmaus?

Due to TS Emmaus has a developmental delay, autism, epilepsy, and extensive tumor burden. She is low verbal and get’s sick easier than most people. She had brain surgery at 17 months to remove a tuber/tumor the size of a ping-pong ball that was causing her to seize multiple times a day- she had no seizure control by taking medicine. After surgery she improved a lot and now her seizures are mostly controlled.

More TS resources

If you would like to learn more head over to the TS Alliance and check it out.

Or we made a couple videos about TS. They are HERE and HERE

I’ve also written A LOT about TS. You can find that on my old blog HERE 

July 2011  is when I started writing about TS (diagnosis time). November 2012  she had brain surgery.

So if you’ve found me because you also are living the TS life (or mom life) and want perspective, resources, humor, ect check those past posts out! Then contact me! So I can say hey, and you aren’t alone, and this really sucks and you can do this and stuff. mmmkay?