October is Eye Health Month – Abby’s Story
This month I am on Breakfast Television BTV with the talented Leah Sarich discussing the importance of early eye exams for children. This segment is dear to my heart as I share the story of Abby whom I first saw at the age of 9 years for her eye exam. She came in with no concerns or complaints. She was seeing well and doing well in school. During her eye exam, Abby was unable to read the eye chart. She was not seeing as well as she thought she was. No glasses were able to help her see any better. On her retinal photographs, I noted an irregularity in both her macula’s (her central vision responsible for crisp vision and color vision) that led me to refer her to see a Pediatric Ophthalmologist for further evaluation and testing. She was diagnosed with congenial macular dystrophy, a condition that is progressive and can lead to blinding vision loss during childhood.
After her diagnosis, Abby soon realized that she was not seeing as well as her classmates. This created a lot of sadness in her life at such a young age. She could not understand why her vision was different from others, why she was different from her peers. Her mother Joel sought counselling to help her get through her new reality of not seeing well. There were a lot of unanswered questions regarding the future of her vision. She underwent genetic testing to determine the type of congenital macular dystrophy but it was inconclusive. She was seen at the CNIB for a low vision assessment to determine if there were any low vision aids to help her get though her day to day activities. And in many cases, adaptations in her life can help her lead a normal functional life.
I continue to co-manage Abby’s eyecare and monitor her sight and field of vision. This amazing girl is now being home schooled due to the hardship she faced to get the supports at school. She uses her IPAD and digital devices to help enlarge print to see clearer. She still struggles with being labelled legally blind and often wishes she could drive one day. She will be returning for genetic and specialized vision testing to see if they can narrow down the exact type of dystrophy and determine if her condition will be passed on if she chooses to have children.
Her mother Joel’s Perspective
Dealing with the kids devastation was very difficult. They didn’t know they didn’t see like everyone else. It was their normal and to find out they weren’t like every other kid was heartbreaking. The course of tests and appointments to determine what was going on was long and always made them feel bad about themselves and they were always wondering what was going to happen next.
Their biggest question was how long they were going to have their vision and if they were going to be completely blind. Challenges I face include finding the right accommodations and supports for school. Even the Calgary Board of Education does not do well with their lack of vision strategists and the lack of understanding by the school board on vision loss.
Unfortunately due to poor awareness of low vision, there are some people who think these kids are learning challenged and they get treated as such. These kids are intelligent and are not given the equality they deserve. We’ve had to make life changing decisions for our child’s education and their future based on their diagnosis.
Take home message: Regular eye exams with our Optometrists play an essential role in maintaining your child’s overall health. We recommend that children have their first eye exam between six and nine months old and there after annually. Children ages 0-19 and those over 65+ years are covered by Alberta Health Care
Dr. Farrah Sunderji, OD