Creative Worker Copes with Disease

Creative Worker Copes with Disease's Effect on Eyes
JUNE 27, 2005
by Karen Jordan, Staff Writer

Chris Cutler, the owner of Paper Moon, and Julia Holman, left, work on a paper bag book at the crafting store 7097 Old Harding Pike, Suite F. Paper Moon is having a benefit Thursday to donate money to an organization that assists people with the rare disease known as PXE. Holman, a Paper Moon employee, has the disease and, as a result, impaired vision.  NINA LONG / STAF

She walks around Paper Moon, amid its shelves filled with rubber stamps and rows of ribbon, with ease.  As Julia Holman assists customers and rings up purchases at the store's cash register, it is not immediately evident that she suffers from a rare disease that threatens her vision.

"It's amazing what she can do," said store owner Chris Cutler. "One would think that someone with limited vision would have a problem creating, but Julia doesn't.  "She teaches classes and helps customers. … Julia is just a great asset to this store."

Longtime customer Len Durham agrees.
"As a crafter, of course, the things that Julia makes are amazing with her limited vision," Durham said.

Holman first experienced symptoms of pseudoxanthoma elasticum, or PXE, at age 9. A doctor noticed angioid streaks, or abnormalities, behind the retina that can lead to vision loss.  Around the same time, a dermatologist performed a biopsy on skin lesions that had formed on Holman's neck. This eventually led to her diagnosis.

While PXE is a genetic disease, no one else in Holman's immediate family has it, she said. PXE affects tissue in the body and leads to abnormalities in the eyes, skin or gastrointestinal or cardiovascular systems, according to PXE International, a Washington, D.C., based advocacy organization.

Making matters worse, a blow to the eye at the age of 20 caused severe hemorrhaging and major damage to Holman's retina.

While she remains upbeat these days, she admits there have been some scary times.  Her right eye began hemorrhaging eight years ago.  She ended up spending nearly seven months in "almost complete darkness," she said.

While Holman has had laser surgery, she is now unable to drive and uses "low vision aids" at home, including closed circuit television, she said.  A special program, Zoom Text, allows her to enlarge the screen on the computerized cash register so she can use it.

While Cutler regularly supports charitable causes and events through her store, it is Holman's illness that led Cutler to organize "Bon Bon Bellevue," a silent auction and dessert tasting.  Proceeds from the event, planned for Thursday, will go to PXE International, which also funds research and provides resources about the disease.

Cutler and Holman have spent hours at Paper Moon assembling donated items ranging from posters autographed by singers Faith Hill and Tim McGraw to cards handmade by customers.

Holman is grateful for Cutler's efforts to raise money to fight the disease, saying Cutler has "the most huge heart" and "unbelievable generosity."  But simply being able to work at the store is almost enough of a gift in and of itself for Holman.

"It's very fulfilling," said the single mother of a teenage son.

"For the first few years of vision loss, I felt really isolated because I couldn't drive.

"(Work) gave me confidence that I can get out and do something again.  I get to meet new people, and it reminds me every day I'm blessed, that a little bit of vision is not bad at all."