BYU student spreads awareness about her rare disorder

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Marfan syndrome is a life-threatening condition that affects the body’s connective tissue and only a few BYU students suffer from it.

You would never know that Allegra Sturdevant, a 21-year old public relations student was suffering from a genetic condition that affects many aspects of her life.

“Marfan syndrome is a life-threatening genetic disorder. It’s pretty rare; only about 1 in 5,000 people have it,” Sturdevant said.

The genetic disorder affects the heart, eyes, skeletal system and all of the connective tissue in the body.

“It can be caused either by a spontaneous mutation of your genes or you can inherit it,” Sturdevant said.

Sturdevant was diagnosed when she was just seven years old and since then, the unknown and medical checkups have become part of her everyday life.

“I get my heart checked every single year. I’ve worn a couple heart monitors here and there just to make sure everything is working okay. And I get checked for glaucoma every other year because of how it affects my eyes,” she said.

Although she is living with a life-threatening disease, she tries to focus on the positive things in life.

“I feel like I lead a really full life and I’m still able to accomplish a lot of things. You just have to find the things that work with your body,” Sturdevant said.

Many of her accomplishments include spreading awareness about Marfan syndrome on TikTok and other social media platforms.

Her posts have helped inform more than 500,000 people about the condition. “You just never know, like I consider myself really lucky because I don’t have a lot of super serious symptoms,” she said.

Even though she will live with the disorder for the rest of her life, Sturdevant hopes her story will bring more awareness to the condition because knowing the signs and getting treatments early on can save lives.

For more information on the condition for to margan.org.

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