Charlotte’s story

To anyone who’s just been diagnosed, I’d say don’t be scared. Glaucoma is treatable, and there’s a lot of help out there from charities, organisations and the NHS. They can help you manage the condition and make adjustments to your lifestyle.

I was diagnosed with glaucoma when I was only about three to six months old. My mother first noticed something wasn’t quite right because I wasn’t following her properly with my eyes. She went to the GP, who took one look and referred me straight away to Great Ormond Street Hospital. I have no recollection of being diagnosed, but my parents told me that they received information about my condition and that I was very well taken care of. 

There’s no history of glaucoma in my family. My doctors believe mine was present from birth and caused by a birth defect. My whole family are aware of my condition, but thankfully, no one else has been affected. 

As a baby, I had around six to eight operations on my eyes, as well as eye drops. These treatments helped, and I don’t have glaucoma anymore, but I still go for regular check-ups at Moorfields Eye Hospital to make sure everything stays stable. When I was little, I didn’t understand what glaucoma was. It was only as I got older and started going for my own check-ups that I began to learn about it. As an adult, I’ve done a lot of reading, and I now understand the warning signs and how much of an impact glaucoma can have on your vision and life if it isn’t treated. 

Being diagnosed so young and having gone through the operations has impacted my life in different ways. I’m unable to learn to drive, which has affected the types of jobs I can go for and where I live. This meant when I was younger, I relied on my family to take me places, and when I started working, I had to make sure my jobs were close by or easy to get to by public transport. At school, I was given extra support, especially during exams, as I was always allowed extra time. In primary school, I did face some discrimination and was sometimes left out of activities because of my vision, but things improved as I got older. At university, I was given equipment and support to help me, which made a big difference. 

Even now, my sight affects my daily life in small ways that I sometimes don’t even think about, like needing text in the right size or asking for reasonable adjustments at work. I’ve learnt to live with it and to adapt in my own ways. Luckily, the pandemic didn’t really affect my eye health or treatment. My care at Moorfields continued throughout the pandemic, just in a different way. They always kept in touch and communicated everything clearly, which made me feel reassured. 

My parents signed up to Glaucoma UK when I was a child, and although I haven’t used their helpline or support groups myself, I think they’re a wonderful idea. I really believe Glaucoma UK is a wonderful charity supporting people living with glaucoma. 

If I could raise awareness about glaucoma, I’d say it’s so important to go to the GP if something doesn’t feel right. Even if you’re unsure, just go. My parents taking me to the doctor when they did quite literally saved my sight. Don’t be afraid to ask for help if you think something’s wrong, because not getting checked can lead to loss of sight, which will have a much bigger impact later in life. 

To anyone who’s just been diagnosed, I’d say don’t be scared. Glaucoma is treatable, and there’s a lot of help out there from charities, organisations and the NHS. They can help you manage the condition and make adjustments to your lifestyle.

---