Two years ago, shortly after moving from Columbus, Ohio, with his family, 31-year-old Chris Gray began losing his eyesight.
Gray attended high school, rides a bike, takes part in activities at Venice Theatre, and fills backpacks with food for indigent children at United Church of Christ.
He has Down syndrome and is a champion swimmer with Special Olympics.
This year, he won first-place awards for the 400-meter freestyle event and the 200-meter backstroke event, and his mixed-relay team took second in regionals, propelling them to state competition.
This would not have been possible if Gray’s grandmother, Carol Gray, had not recognized the changes in his vision and if she had not recently read a story in the Down Syndrome News, published by the National Down Syndrome Congress, describing keratoconus.
“I’ve always enjoyed reading with Chris,” Carol said. “All of a sudden he could no longer see the words. He could only read big print.”
Keratoconus is a noninflammatory condition in which the cornea progressively thins. If not diagnosed quickly, the patient can lose all vision. Even with treatment, the patient may lose some vision.
Among the symptoms of keratoconus are increased sensitivity to light and glare; being unable to achieve good vision with prescription glasses; and developing an irregular astigmatism leading to nearsightedness with other complications. The story Carol read reported a higher incidence of the condition in the Down syndrome community. In fact, it said, 1 in 67 people with Down syndrome are eventually diagnosed with keratoconus, compared to 1 in 2,000 people in the general population or 1 in 750 Americans.
“Except for his Down syndrome, Chris had been in excellent health,” Carol said. “We might not have realized what was happening if I hadn’t read the article in the Down Syndrome News.”
The family began exploring options for his treatment, but due to problems with insurance and costs associated with treatment, it took some time for them to find the right doctor.
Dr. Henry L. Trattler, founding member of Center for Excellence in Eye Care and a board-certified ophthalmologist, has practiced ophthalmology for more than 40 years in Miami. His daughter was diagnosed with keratoconus, giving him a special interest in the disease. Shortly after learning about Trattler, the Gray family was on the road to Miami.
According to the National Keratoconus Foundation, “corneal crosslinking (CXL) represents an important milestone in the treatment of keratoconus. While CXL has been performed for more than two decades internationally, approval by the U.S. Food and Drug Administration took place in 2016. CXL is a nonsurgical procedure performed in the doctor’s office that takes about an hour. The treatment strengthens the weak corneal structure by allowing collagen fibers in the stroma to form new bonds to each other. The result is that the progression of KC stops or is slowed. CXL does not reverse KC changes that have already occurred.”
There are other treatments, such as a corneal transplant for the most severe cases.
Chris received the corneal crosslinking.
“It has curtailed his vision loss,” Carol said. “We were lucky he got the treatment before he lost his vision and we are grateful that Venice United Church of Christ paid for it.”
“We just want people to know about this somewhat uncommon disease so that anyone who starts to lose vision will seek a fast diagnosis,” Carol said. “Getting treatment in time can stop the deterioration of vision. Some people don’t know about it. They can go blind if they wait too long.”