Alicia Novi… In the News!

May 25, 2014  |  by Farrah Duffany Record-Journal staff

From the Record – Journal

Southington athlete runs through visual impairment

SOUTHINGTON — About a year ago, Alicia Novi noticed that her eyes would start to get red easily and then she had constant headaches.

As the symptoms continued she noticed her eyes becoming more and more sensitive to the light. Then she saw a spot out of one eye and soon the vision in both of her eyes became fuzzy to the point where she couldn’t make out images.

Her doctor diagnosed her with chronic bilateral iritis, a type of uveitis, a disease of the eye that can cause periods of blindness or, if left untreated, permanent blindness due to an inflamed iris. The iris controls the amount of light that enters the pupil. When it is inflamed, it can distort a person’s vision. Novi’s doctor treated her symptoms with steroids and dilation.

Despite her condition, Novi, who is now 34, continued to do what she loves: running. At times the condition was so painful and lasted so long that it kept her from a races and practices, but when it would subside, she was back on the asphalt again.

“The first time I couldn’t run for almost a month. I didn’t have enough vision to see by myself,” said Novi, a Southington resident. “You don’t know where you’re running. And I couldn’t go in bright places.”

There are more than 85 known causes of uveitis, and it leads to 10 percent of all cases of blindness in the United States, said Jamie Metzinger, a manager of clinical research with The Ocular Immunology and Uveitis Foundation in Cambridge, Mass. Estimates for the frequency of uveitis are anywhere between 15 to 50 cases per 100,000 people, she added.

“When we do a workup on a patient, one in every two patients we will never find a cause because our testing isn’t specific enough or it doesn’t give enough information,” said Metzinger. “It manifests differently on a case-by-case basis.”

Novi, a 1998 Southington High School graduate, said she was fairly active in high school and college. She picked up running two years ago when she decided she wanted to lose some weight. Once she started, she never realized she would be entering races and running nearly 20 miles a week.

Last year, Novi ran the Hartford 5K race and met a group that helped change the way she runs.

Achilles International provides guides for runners or athletes with disabilities. There are nearly 70 chapters around the world, said Erin Spaulding, president of the Achilles CT chapter.

“They can do it despite any physical disability they may have,” Spaulding said. Novi “because of her visual impairment, needs to run with a guide that may be able to give a visual that she may not have on her own.”

On a bright day, Novi usually tries to run with her head down to avoid the light. She used to wear large prescription sunglasses and a visor when she would run, but that would only help block out some of the sun.

“I practice safe running,” Novi said laughing.

Now a guide helps direct Novi through the course of a race.  The guide tells her where curbs are, if there are potholes, how many miles are left, and when they are approaching a hill.  Anything a person with perfect vision would need to know the guides convey to Novi. Last year she ran nine races and her goal is to run 10 this year, including the Amica Iron Horse Half Marathon, organized by the Hartford Marathon Foundation, in Simsbury on June 1.  Last year she missed it because she couldn’t see well enough.  “I couldn’t be outside in that bright sun to run the race,”

Novi said. “I couldn’t see enough to walk it either, not on my own.”

While she runs, Novi said she keeps her father Tom Novi’s wedding ring in her fuel belt. Her father died in February and was a huge support system for her running. He also pushed her to continue despite her condition.  “He told me all I have to do is put one foot in front of the other and keep breathing,”  Novi said. “He’ll keep running with me.”

She hopes to finish the half marathon in June in an hour and 25 minutes.

“We’re just extremely proud of her,” Spaulding said. “She is the most active Connecticut athlete. I’ve just been happy to support her so she can continue to be successful and to persevere.”