LAS VEGAS (KTNV) — International Day of Persons with Disabilities is a day to bring awareness to lesser known conditions and to raise money for cures. Organizations from all over the world, including ones in the valley, are helping with the cause.
"As a person with a disability, we want to be seen and heard and be able to live life as normal as possible," said Kyle Underwood, a Project Manager at the Cleveland Clinic.
Underwood is 27 years old and lives in Las Vegas. When he was just four years old, doctors diagnosed him with Hunter Syndrome.
"At that point of diagnosis, there was no known cure or treatment. My parents were basically told take your kid home and enjoy him while you can," Underwood said.
According to the Cleveland Clinic, Hunter Syndrome is a rare genetic mutation stopping the production of an enzyme regulating complex sugars. It can impact growth, can cause enlarged organs, can lead to hearing loss, and even death in severe cases. It's extremely rare and only impacts one out of every 100,000 to 170,000 boys. There is now a treatment for it.
"What they do is every week they give me my enzyme, which allows me to be able to have the enzyme in my body to function normally," Underwood said. "It does eat into your day. It's four to five hours a week, every week for the rest of your life."
He said most doctors and pharmaceutical companies will work with patients on payment methods since it's a rare condition. However, Underwood said over the course of the last two years, if he didn't have insurance, the cost of his medication would be around $2 million. He added he'll see 10 to 12 specialists a year, on top of the medication. While the medication treats the condition, there is still no cure.
With that knowledge, Underwood took it upon himself to help others in his position. He graduated from the University of California, San Diego with a Bachelor of Science Degree in Public Health. He also earned his Master's Degree in Health Administration from the University of Southern California.
He said he wants to show his disability will not hold him back.
"The way I look at it is, I'm Kyle before I'm Hunter Syndrome. I'm Kyle before my disability. What I try to do with my career and my life is to show everybody that despite your limitations, you have abilities to make a difference," Underwood said. "You have a voice. You have a story."
He now works with the Cleveland Clinic in Las Vegas and Project Alive raising awareness and money for Hunter Syndrome. He also travels the world sharing his story to everyone he can. He also said the biggest help to people with the disabilities is having an ally, so he suggests becoming knowledgeable and being there for others in need.
