Juvenile glaucoma is a rare form of glaucoma that occurs in children, often detected in infancy or early childhood. It involves increased intraocular pressure, which can lead to vision impairment or blindness if left untreated. Diagnosing this condition early can be a challenge, especially in newborns, as the symptoms might not be immediately apparent. Here, Ben Grass opens up about his juvenile glaucoma diagnosis, and how his life was shaped by early treatment and his parents’ persistent advocacy.*

Push for a Diagnosis

Grass, born in Canada, was diagnosed with glaucoma at just 4 ½ months old. His mother had been concerned even before birth, noticing that his eyes appeared unusually large during ultrasounds. After he was born, she persistently pushed for further investigation despite multiple doctors dismissing her concerns. It wasn’t until a more critical health episode that specialists finally diagnosed him. 

“My mom continued to push that she thought that there was something wrong with my eyes,” Grass revealed, and after several more appointments the doctor agreed to submit a referral.

Grass finally received a diagnosis, but by then, significant damage had already occurred, with up to 85% damage in one of his eyes.

The Power of Advocacy

Once diagnosed, Grass underwent emergency surgeries to stabilize his eye pressure. His family’s persistence not only saved his sight but highlighted a broader issue within the medical system regarding listening to parents’ instincts. 

His story emphasizes the critical need for healthcare providers to trust parents who sense something is wrong with their child.

“My parents were such strong advocates for me through the process,” Grass says, grateful that they continued to challenge [doctors] when they knew something was wrong.”

Without this relentless advocacy, he states, he would likely not have received the care needed to preserve his vision.

How Glaucoma “Shaped What I Wanted to Do”

Living with juvenile glaucoma deeply influenced Grass’ career and his passion for healthcare. Now working in the patient engagement software industry, he has remained involved with the Glaucoma Research Foundation (GRF), joined its Steering Committee, and continues his efforts to raise awareness and improve patient care.

Reflecting on his journey, he offers advice to other parents facing similar challenges.

“Trust your instincts, and continue to seek out what you feel is best,” he urges. “Continue to be that champion.”

*Glaucoma Research Foundation Videos. (2023, January 31). Congenital Glaucoma Patient Story: Ben Grass [Video file]. https://www.youtube.com/watch?v=3_hW8EenT_4 

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