The wonders of a corneal transplant and the *National Keratoconus Foundation site

Ashlee Cornell thought she was just getting old. She was all of 26. The Idaho native's vision was deteriorating, and no glasses helped. When her sight and her headaches became increasingly worse, she visited a family doctor who tested her and sent her to a specialist, where she was diagnosed with keratoconus. A year of trying to find the right rigid gas-permeable contact lens was filled with sight improvement but agonizing pain, as her contact lenses pressed and rubbed against the cone.

A trip to the Moran Eye Center in Salt Lake City was eye-opening, to say the least. While her corneas "were not bad enough for a transplant," a lens-fitting specialist took a new approach, fitting lenses that skimmed her cone instead of pressing it. That changed everything: She could now see with less pain and added glasses to cut down on persistent ghost images.

Two years later, Cornell was finishing nursing school and dealing with decreases in vision clarity and a return of the terrible headaches. When she went back to the lens specialist, corneal mapping showed her vision had deteriorated, and the tight lenses she had previously worn had caused scarring of her corneas. They were now ready for transplants, the first of which she underwent this past September ("It could not have gone better," she says happily); she will undergo a transplant on her right cornea in December.

Cornell, who is now a pediatric nurse at the Oklahoma University Children's Hospital, says the hardest part of her whole KC ordeal was not having information about her disease. Finding the NKCF Web site through a search engine several years ago made a huge difference.

"It's the most complete, thorough, lay-term site – and the big-print option means I can actually read it!" she says. Cornell wasted no time sharing the site with her friends and family; she even posted the URL on her Facebook page. "The more information I found, the less fearful I was – and my family and friends were," she says. "It's hard to describe to people what you see. I used to try to draw words, then try to draw ghosting around them to show my family what I saw," she says. "The photos on the NKCF site made such a difference. They let my family see what I see; it helps them understand."

Cornell's two sons, ages 7 and 10, "have had to cope with my illness as much as I have," she says, crediting NKCF with helping them to better deal with her KC. Indeed, the boys are just as excited as she is about her corneal transplants, repeatedly telling her: "You'll be able to throw a football with us again, mom! You can go out in the wind!"

*The National Keratoconus Foundation became a program of the Gavin Herbert Eye Institute, UC Irvine in 2016. 

Posted November 2009