A toddler in a white cardigan with short blond hair and a eye patch pushes a trolley of toys

Amba’s story: “My glaucoma is caused by my visible difference”

Our campaigner Amba discusses how glaucoma affects her and what it’s like to live with an invisible condition as part of her visible difference.


Happy World Glaucoma Week!

It’s the start of World Glaucoma Week and I wanted to share my glaucoma story with you. Glaucoma is an eye condition where the optic nerve, which connects the eye to the brain, becomes damaged. This usually happens with old age. Around one in ten people over 70 will develop glaucoma in their life. In children it’s rarer to develop glaucoma either in early childhood or even at birth. Around five in 100,000 children in the UK have glaucoma.

Now as a young adult my glaucoma is invisible to most people and they don’t know the struggles I have to face on a daily basis.

My glaucoma is caused by my visible difference, which is a Sturge Weber syndrome birthmark. My birthmark covers my eyelids which affects the pressure on the eyes resulting in the optic nerve being damaged. This then resulted in one eye being much larger than the other which made people stare even more than they did with my birthmark.

Often when I was a baby, I would have to have patches over my eyes, either after an operation or as part of treatment which definitely did make people stare and ask my parents questions.

On left: a woman, mid-late 20s, with shoulder length blond hair and glasses is holding a baby in a white romper who has a patch over her right eye. In the centre: a school portrait of a young girl, 5-6 years old, wearing a blue polo, navy jumper and glasses. On the right: a toddler, sitting on a green and brown patterned sofa. She has an eye patch and short blond hair and is wearing a white t-shirt, light blue jeans and a navy jacket.

Amba wants to raise awareness of the invisible conditions associated with her visible difference

My mum says: “I remember we were at a Christmas family get together after Amba’s first eye surgery and I had to remove her eyepatch to do her eye drops, which made her cry as she was only 12 weeks old, and a family member said ‘why are you doing that to her, you’re hurting her’, it made me feel awful, and as a parent I blamed myself for many years as to why Amba was born with these conditions.”

It’s even hard to explain to my loved ones, even my mum and dad, what it’s like to have glaucoma and to see the world completely differently.

Once I got older I understood my eye condition more and the importance of keeping up with my eye drops and wearing my glasses to help retain my sight. Now as a young adult my glaucoma is invisible to most people and they don’t know the struggles I have to face on a daily basis.

It’s tough because everyone doesn’t see what I see through my eyes. It’s even hard to explain to my loved ones, even my mum and dad, what it’s like to have glaucoma and to see the world completely differently.

Managing my visible difference and invisible conditions has definitely been a challenge, trying to keep everything under control at the same time, but me and my parents just face the problems head on together, then we know we can get through anything.

Want to learn more about glaucoma?

Take a look at these resources:

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