BioMarin patient Kendra conquers MPS VI

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BioMarin patient Kendra conquers MPS VI

After finishing college, Kendra Gottsleben, who has MPS VI, found a job at the Center for Disabilities, part of the University of South Dakota medical school in Sioux Falls.

She lives with her mom; her parents divorced when she was in high school; her dad is a track-and-field coach at University of South Dakota.

Naglazyme, a drug by San Rafael-based BioMarin Pharmaceutical, has helped reduce her other illness. "I used to get colds a lot more," Kendra said. "My energy level is amazing. October is a month I have to be careful. A couple of years ago, I got pneumonia. Once you have pneumonia, you're always prone to it. I'm pretty healthy. I do have some heart complications."

The medication brought other benefits. "My hair got softer," Kendra said. "My skin got softer. My liver and spleen shrank to normal size. My gums receded so you could see more of my teeth. My tongue got smaller. I started walking a lot better."

Some things cannot be changed.

"Because I am so short, I have trouble reaching things," she said.Texting Kendra on her 30th birthday

James: Hi Kendra. Happy Birthday!

Kendra: Hey thanks a bunch!

J: Hope you have fun today. And some cake!

K: Thanks! How are you?

J: I'm doing OK. I started writing your story on Friday. Will work more on it today. I was telling a friend about you yesterday. What courage you have.

K: Ah, thanks.

J: You have more character and grit than many people twice your age. Inspiring.

K: Well I do what I can! Loving life the best I can with what I've been given!

J: That's a wise way to be.

K: Looking forward to your article!

J: Thanks. It's an honor to be writing it.

K: :-)

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