Diagnosed with a rare form of glaucoma at age 15, Alex LeClair reflects on her journey with the sight-stealing condition.
Call it a mother’s intuition — When Alex LeClair’s eye looked slightly off at the dinner table a few years ago, her mother immediately worried about her daughter’s sight. That concern may have saved what was left of Alex’s vision.
“We were eating Easter dinner when my mom thought my right eye looked lazy,” Alex said. “I was a sophomore in high school at the time and didn’t think much of it.”
The following morning, Alex’s mother came into her bedroom and had her cover her left eye. Everything was black, and that’s when she realized — Alex couldn’t see anything out of her right eye.
They booked a vision test at a local optometrist and received a laundry list of shocking news: Alex was fully blind in her right eye due to juvenile open-angle glaucoma (JOAG). She would never be able to drive.
It was also very possible that her siblings also had the condition. That’s when Alex’s grandmother suggested a trip to Mass. Eye and Ear.
Vision’s “Silent Thief”
“We rushed to Boston and waited in the Emergency Department,” Alex said. She was seen that day by Teresa C. Chen, M.D., a glaucoma specialist at Mass. Eye and Ear, who confirmed the diagnosis.
Often called the “silent thief” of vision, glaucoma is a group of diseases that damages the optic nerve gradually — and often without any warning signs. JOAG is a particularly rare form of the disease, affecting about one in 50,000 individuals between the ages of 5 and 35.
“Dr. Chen said that, within months, I wouldn’t have been able to see at all. I would have been legally, fully blind,” Alex said of her diagnosis.
While Alex’s vision could not be restored in her right eye, Dr. Chen focused on keeping her pressures stabilized with drops to preserve the vision in her left. However, her pressures were still too high — even with the drops. After trying a medication that changed the taste of food and made Alex tired, moody and fatigued, Dr. Chen decided it was time for surgery.
“They don’t really have surgeries for people my age, because JOAG is so rare,” explained Alex. “The original plan was to do a surgery that’s done on babies, but that only held for a few months.”
Alex then underwent surgery that is typically done on elderly patients, which successfully stabilized her pressures. More good news came—Alex would be able to drive, and although she had to sit on the field hockey bench during her junior year of high school, she returned to her team for her senior year — and won the State Championships.
Living a (Semi-Normal) Life
Alex, who is now 22 years old, has since graduated from college and is an elected member of her town’s school committee. She wears polycarbonate, anti-shatter glasses with a low-level prescription to help manage side effects from her four surgeries and to protect her eyes. She continues to see Dr. Chen every four months for testing, to ensure that her optic nerve looks stable.
And more good news: her siblings don’t have any indication of glaucoma.
“Mass. Eye and Ear saved my vision and has allowed me to continue living a semi-normal life. I’m so grateful for the Emergency Department staff, Dr. Chen and my friends and family,” said Alex.