Most young people with uveitis, a rare disease, also have juvenile arthritis
Only about one out of 10 kids with arthritis also develop the disease in their eyes
If not treated early, uveitis can damage vision and in some cases lead to blindness
Early diagnosis and treatment with biologic drugs, such as Enbrel, can control swelling
Joy Ross says it was love at first touch. Ross, who is now blind, likes to tease that she met her husband, George, on a blind date. At the end of the night, he took her hands in his.
She had little sight then and none now, but her journey into darkness started more than 30 years ago, long before she met her husband. As a small child, she developed arthritis that also attacked her eyes, eventually robbing her of her sight.
When she was about 3 years old, Ross says her mother noticed she was bumping into things as she’d play. After going from doctor to doctor, Ross was diagnosed with juvenile arthritis and a rare eye disease called uveitis. The same inflammation that caused swollen painful joints had spread to her eyes.
“The best I remember seeing, even as a child, was the big E on an eye chart with my left eye,” says Ross. Her right eye saw far less, glimpsing only peripheral shadows.
Her eye disease, uveitis, means inflammation or swelling in the middle part of the eye called the uvea.
Doctors only diagnose about 2,250 cases each year in children younger than 16. Most young people with uveitis also have juvenile arthritis. But only about one out of 10 children with arthritis also develop the disease in their eyes. If not treated early, uveitis can damage vision and in some cases lead to blindness, according to the Arthritis Foundation.
“In children who typically get uveitis, it starts so gradually, so insidiously, that the eye never becomes red and they never experience pain and they don’t know that they’re losing vision. In fact, a common way to pick it up is to be screened with your vision when you’re starting school,” says Ross’ physician, Dr. James Rosenbaum, chief of rheumatology at Oregon Health and Science University in Portland, and chief of ophthalmology at Legacy Devers Eye Clinic.
Because 80% of childhood uveitis occurs in children with juvenile arthritis, Rosenbaum suggests parents should immediately take their children in for a checkup as if they would take them in for a complaints about an ankle or knee.
Ross got steroid eye drops to reduce swelling; that’s the standard first line treatment for uveitis. But because her case was severe and the medications limited, she developed cataracts and needed eye surgery.
In high school, she tried methotrexate, a chemotherapy drug, to treat both her eyes and her painful arthritis. But Ross didn’t respond well to the treatment and had to stop.