What I wish you knew: SIUE graduate turns her diagnosis into a way to educate others via YouTube

Photo courtesy of Muniz.

Most people have heard of epilepsy, but don’t know the specifics of the condition. Integrative studies graduate Allany Muniz, of Collinsville, Illinois, started a channel to educate people about the basics and details that aren’t always commonly known.

 

When Muniz was 14 years old, she experienced her first seizure, an event that led her life in a different direction than she may have anticipated. 

 

“I was getting books for school, and me and my mom were waiting to check out,” Muniz said. “Then next thing I knew I had blacked out. I had no idea what happened.”

 

Shortly after waking up in a hospital, Muniz said the doctors and her mom explained she had experienced a seizure and that she had been diagnosed with epilepsy.

 

Epilepsy is a condition that affects the brain by causing seizures, a disruption of the electrical communications between neurons. It is different from many other diagnosable syndrome in that each person is diagnosed differently based on the features they experience during their seizures. According to Epilepsy Foundation’s website, some of the features that are primarily looked into may include the age of first experienced seizure, part of the brain involved and previous history in family members. 

 

Muniz was diagnosed with a form of epilepsy that is partial, so her seizures affect only one part of the brain at a time. She said some seizures can be unnoticeable. 

 

“Absent seizures [are a type of seizure] which a lot of people don’t really think about. We can have a conversation, and next thing you know I black out. It usually lasts 10 seconds,” Muniz said. “I [could have] had an episode right in front of you and no other person would know.”

 

After her diagnosis, her mom researched epilepsy, the different types of seizures and how to navigate the diagnosis.

 

“I had an idea, but I didn’t really know the process [and] how there’s more than one [form of epilepsy,]” Muniz said. “Turns out I’m diagnosed with partial, which is controlled. I could be fine for ten years and then randomly have an episode.”

 

Muniz started her YouTube channel after realizing she wanted to educate others with epilepsy who didn’t know where to turn for information.

 

“From my experience, I didn’t really have anyone to talk to. So for me if I can help that one child that is looking through YouTube and sees my channel and be like okay there is someone out there that understands what I’m going through,” Muniz said.

 

So far, she has made videos where she talks about common types of seizures, the difference between a person with epilepsy and a person who has had a seizure, her story and more. She said her channel is a refresher compared to the Facebook group chats for epilepsy that tend to focus on the downsides.

 

Muniz said it’s important for people to learn what to do for a person that is having a seizure to make sure you can assist them properly.

 

“You would have to know what to do. You have to lay the person on their side, whether right or left, make sure they don’t bite their tongue and if the seizure is more than two to five minutes, then you call the hospital,” Muniz said.

 

In the future, Muniz would like to discuss controlled seizures with driving, dating life with epilepsy and much more on her channel.

 

To keep up to date on her journey, subscribe to her YouTube channel and follow her Facebook page.

 

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