Joanne Gaida

She has the future in her sights

Joanne Gaida’s father gave her something no father wants to give his daughter: a gene that causes Wagner’s disease. This hereditary, degenerative eye disorder creates holes in the retina, which in turn causes blindness. There is no known cure.

But thanks to a breakthrough by researchers at the University of Ottawa Eye Institute at The Ottawa Hospital, this gene can now be isolated and the possibility for a future cure is one step closer. This is good news for Joanne-who is now blind in one eye-and any future children she might pass the gene on to.

“We discovered I had Wagner’s disease when I was eight,” recalls Joanne. “A fall on the ice tore the retina of my right eye. My vision continued to get worse, and I was diagnosed with a full retinal detachment and no hope of saving any vision in that eye.”

Joanne spent the rest of her childhood living in fear of damaging her left eye and, therefore, going completely blind. This meant standing at the sidelines during recess watching other kids run around, chase each other and play games like dodge ball. She also had to visit a specialist every 4 to 6 months for many years.

As an adult, her fears for her own eyesight are compounded with concerns about passing this gene on to her future children. In 2002, Joanne and dozens of her family members took part in an Eye Institute study that is providing much hope for them and for other families affected by this rare disease.

“Thanks to this research, scientists at the Eye Institute have developed a simple blood test that can determine if someone is affected by the disease,” she explains.

While there is still no cure, Joanne will now be able to have any future children tested as newborns, removing years of worrying and wondering. If they have the disease, they can begin receiving the care they need right away, giving them a good chance of protecting their full vision throughout their lives. And if her children don’t have the disease, they won’t have to stand on the sidelines, watching while other kids skip and tumble.

“My family and I have received and continue to receive incredible care from the Eye Institute. Beyond the treatments, beyond the care, beyond feeling that the doctors, nurses and other support staff are part of my family, the Eye Institute gave me a gift of knowledge and hope.”