Alisha’s Story: Life Doesn’t Stop With Glaucoma

The doctor noticed that something was wrong with Alisha’s eyes and referred her to the Royal Hospital for further assessment. Her older sister, who was three years old at the time, was asked to come too.

That was when the family discovered that both sisters had congenital glaucoma.

“My sister and I were both diagnosed with an extremely rare eye disease - congenital glaucoma.”

For Alisha’s parents, the diagnosis was frightening. At the time, information about glaucoma was limited, and much of what they found focused on the possibility of blindness.

“As my parents have always described it, their ‘worlds came crashing down.’”

Both sisters underwent emergency surgery the following morning. Their childhoods then became centred around managing glaucoma, with regular hospital visits, medications and procedures to monitor their eyes.

Alisha’s eyes remained stable for many years. But when she was 20, her right eye pressure became unstable and she needed further surgery in London to replace her drainage implants.

The surgery failed four times. Because she was young, Alisha healed quickly, causing scar tissue to block the drainage systems.

“I really struggled.”

The experience became particularly difficult while she was studying at university. During her surgeries and recovery, she needed help with everyday tasks that she had previously managed herself.

“My own mum had to wash my hair for me, cook for me, tie my shoelaces. I really struggled to feel independent.”

The uncertainty and disruption took a toll on her mental health, and at one point Alisha feared she might have to leave university. Eventually, however, her eye stabilised and she graduated three years later.

Today, Alisha’s life looks very different. She takes eye drops every night and remains mindful of protecting her eyes, but glaucoma does not prevent her from enjoying the things she loves.

“I have many Hobbies, I play volleyball, Gaelic Football, dancing, swimming and Pilates! I have a full drivers licence also! My life feels extremely normal and I am so grateful to have that.”

Having her sister alongside her has also been an important source of understanding and support. 

“I feel like having my sister with glaucoma also allows us to help each other, because we are able to understand what the other is feeling or going through which makes things feel a lot easier.”

Alisha is also grateful for the advances in glaucoma research and treatment since she was diagnosed.

“The difference in what medical professionals can do today compared to 20 years ago is outstanding.”

Her message to someone newly diagnosed is one of reassurance and hope:

“Honestly it will be okay.”

She encourages people to take their treatment seriously, attend regular check-ups, protect their eyes and pay attention to changes in their body.

And above all, she wants people to know that a glaucoma diagnosis does not mean giving up the life they imagined.

“Just know life doesn't stop with glaucoma.”

Have a glaucoma story to share? We'd love to hear from you: https://glaucomaaustralia.typeform.com/ShareYourStory