How to React to the TSC Seizure You Never Expected

I was once walking through an outdoor festival near my hometown.

There was a band playing off in the distance, but I didn’t know them or the song they were playing. The air was thick with the smell of all sorts of delicious seafood, meats, and exotic foods from countries I’ve never visited. There was even sugary, calorie-laden desserts.

Everything was as one might expect. That is until I witnessed a friend of mine suddenly clam up and have a vacant look before he had a seizure right in front of everyone.

I didn’t know until later, but he had tuberous sclerosis complex (TSC).

I had known him for years, but I had never seen him have a seizure. He stopped walking as another friend and I continued walking. We noticed right away and turned to face him. He seemed to be looking far past us, but he didn’t respond when we teased him.

I remember seeing that little muscle in his jaw appearing. And though we were only feet away and it felt like the whole thing was happening in slow motion, we watched helplessly as he crumpled to the ground.

As we knelt beside him, his legs and arms began to twitch. It was a surreal moment. I felt far away inside myself. I didn’t even have the focus to yell for help.

Luckily, a big tough looking guy standing in line for beer saw what happened and immediately reacted. He rushed the few feet between us and had a light jacket wadded up into a ball in seconds. The jacket went under my friend’s head, and a gentle reassuring hand went out to touch our friend’s shoulder.

The burly stranger asked in a remarkably calm tone if either of us knew if our friend had epilepsy. We both came back to the moment at the question. We both said, “No.”

Our helpful stranger asked our friend’s name and told someone else who was standing in the beer line to get the EMTs. He told us not to worry, help was on the way. He spoke in a gentle tone as he said our friend’s name over and over again and that everything was going to be okay.

I was still stunned a few minutes later when the seizure slowed and stopped. The EMTs arrived in time to see the last few convulsions. They, too, asked if our friend had a history of epilepsy. They stayed with us until our friend had recovered enough to answer questions.

That’s when we found out that he had TSC.

Apparently, he had the disease for years and none of his friends knew because he was embarrassed. Sadly, the big stranger who knew exactly what to do disappeared without saying a word. I know he was there when the EMTs arrived because he gave a quick rundown of everything that had happened. But, the next time I thought to look for him, he was gone.

Needless to say, there are a few lessons that you can learn from my experience.

ONE: If you are around someone when they go into a seizure, do what you can to prevent them from injuring themselves. If we had been on concrete instead of grass, his convulsing may have injured his head or caused scrapes and cuts.

TWO: Don’t put anything in the person’s month. If a seizure goes on for a long time, breathing can be restricted, and something in their months is just getting in the way.

THREE: If you have epilepsy or something else that may cause seizures, let your friends know. If the stranger had known that our friend had TSC, he wouldn’t have bothered the EMTs unless the seizure lasted five minutes or more.

Of course, there are medications that are available to help to manage seizures. In fact, a new medicine was in the final stage of trials just last year.

Read more about that study by clicking here.

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