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'Even if I have challenges, I want rise about above it all'

Zoe Greszler • Oct 12, 2017 at 1:03 PM

Alicia Hopkins, 32, graduated from South Central High School and EHOVE Career Center and received her degree in journalism from Malone University.

A full life ahead of her, she had aspirations of eventually making her way to writing for the New York Times. 

That all changed though when she was diagnosed with dysautnomia, a disease causing malfunctions of the autonomic nervous system; Ehlers-Danlos Syndrome, a disorder of the skin, joints and blood vessels; and Mast Cell Activation Syndrome, an immunological condition causing many allergies. 

Most days, Hopkins is in a wheelchair and low on energy, fighting side effects of the diseases as well as weekly doctor’s visits and medical infusions.

“My life is definitely different,” she said.

“I went to college and I thought I’d be writing for the New York Times. I don’t have the ability to do things people my age can do. Just on disautonmia alone, probably five out of seven days I’m using my wheelchair. When I stand up, my blood pressure goes down and heart rate goes up.  

“And with the Mast Cell Activation Syndrome, basically you’re allergic to everything. So basically I do mostly pureed foods. I don’t really go on social outings with my friends because you don’t eat the same things. You can’t get a full-time job because of the illnesses. I have five doctor appointments a month and I get infusions a lot. But I do get to volunteer once a week.”

It’s in dancing lessons she offers through the volunteer services that she finds her true happiness and freedom.

“I have this gift to dance with my hands,” the now Summit County-resident said. “Every time I get to dance I get so excited. I light up inside. It’s like it doesn’t matter what illness I have it’s just like this magical moment.”

Now she’s going to use that gift to bring awareness to dysautonomia, a widely unknown or misunderstood disorder. 

“I teach dance for third- through fifth-graders with an after-school program; I’m an artist and author,” she said.

“I’ve done a lot with my life. But when I heard about the Ohio Miss Amazing pageant I got really excited so I could do something to raise awareness. I thought it would be good to do this to raise awareness for my illness. And they just try to build confidence in women. That’s my purpose in life — even if I have challenges, I want rise above it all.”

October is Dysautonomia Awareness Month, adding a cherry on top since the pageant will take place this weekend.

“No matter where you are, you can be used and you can help someone no matter where you are,” she said, adding she believes she’s been “blessed” in entering the pageant.

“It’s like being there and focusing on others gets my mind off my own problems,” she said. “I’m excited; I’ve never done anything like this in my life. I think we need to try something new every day.”

The Ohio Miss Amazing pageant takes place Saturday at the Firestone CLC Performing Arts Auditorium in Akron. 

The pageant’s website says it’s “a community of people that invests in the strengths of girls and women with disabilities because girls with disabilities can and do accomplish amazing things.”

While the pageant has been offered in many other states for years, this will be Ohio’s first time hosting the pageant, Hopkins said. 

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