Seeing Things Her Way
Patient: Julia Band Orange
Diagnosis: dry eye, caused by autoimmune polyendocrinopathy syndrome (APS) type 1
Sight Restored: November 2011
Julia Band Orange was just a one-year old little girl when she began to have symptoms of autoimmune polyendocrinopathy syndrome (APS) type 1, an extremely rare autoimmune disease. Hallmarks of APS type 1 include photosensitivity, dry eyes and keratopathy, a non-inflammatory disease of the cornea. For five years she suffered with extremely dry eyes, light sensitivity and frequent eye infections. Her parents, Jennifer and Pat, treated her condition with “many, many eye drops – Restasis, Refresh, serum, Alrex, Lacrilube”, as well as antibiotics. Unfortunately, Julia never found much relief from the constant dryness.
As children do, Julia took her situation in stride, but her parents remained very concerned about the potential for permanent damage/injury to their daughter’s eyes. So they were relieved when Dr. Asim Ali, an ophthalmologist at the Hospital for Sick Children (SickKids) in Toronto, Canada, told them about PROSE, explaining that it could protect Julia’s eyes from future corneal abrasion and improve both her vision and the overall health of her ocular surface.
In November 2011, six-year old Julia, Jennifer and Pat traveled to BFS. Through the treatment provided by Ryan Ridges, M.D. and the support of ophthalmic technician/trainer Kris Somers, Julia returned home with new prosthetic devices. She was even able to insert her devices by herself!
“Dr. Ridges worked so patiently with her and listened to both of us. It's such a relief as a parent, because it is sometimes a battle to be heard. Having one dedicated trainer was also really smart; Julia and Kris bonded and got to know how each other worked,” said Jennifer.
PROSE treatment has given Julia great relief from dry eye symptoms and markedly improved her vision. Julia is also happy because she can draw better with her improved sight; she is also excited to return to soccer and baseball, confident that her new devices will help her to improve her game.
About their BFS experience, Jennifer shared: “It has been great for me, because the people here have been very responsive to my suggestions on how to work with Julia, and you don't get that everywhere. Even in a pediatric environment, you may have to push to get them to respond to your family’s particular way of doing things.”
“They tell you in medical school not to focus on the disease and forget about the patient. Julia has a way of making you forget about the disease. She always finds the game in an obstacle and the life between the symptoms. It was my great honor to help her keep seeing things her way for a long, long time.”
- Dr. Ryan Ridges