Andrea’s story

If you’ve just been diagnosed with glaucoma, my advice would be to make sure you get all the facts. If you’re feeling overwhelmed, take someone with you to appointments – they can help take in the information.

I was diagnosed with juvenile open-angle glaucoma when I was 14. Most of my family are short-sighted so when I started noticing some problems with my eyes, I booked a routine check-up at the optician. Before the eye test, I’d already found certain classroom environments difficult, especially those with plain white walls – what I called ‘blank’ spaces. I often felt a slight ache in the back of my eyes, and sometimes I’d complain about seeing small specks or floaters that would come and go. I assumed it was just eye strain and that I probably needed glasses. 

After checking my eyes, the optician called my Mam into the room. He explained that there was something in my eyes that he wanted to investigate further, and he referred us to the emergency outpatients department at Sunderland Eye Infirmary, where I had several tests. 

I was asked if there was any family history of glaucoma. I remember lots of conversations with my family, trying to figure out whether anyone else had suffered from eye problems or if the condition might’ve been inherited. But we never got a clear answer. 

When I was finally diagnosed, I felt a mix of anxiety and relief – I was worried about what it all meant, but glad that it was a condition that could be treated. My diagnosis also caused a lot of worry in the family, but I think my parents were also relieved it wasn’t something even more serious. I was told I’d need eye drops initially and then a trabeculectomy in both eyes as soon as possible. This terrified me. I’d never had surgery before, and I was very nervous. I was also told that any eyesight I’d already lost couldn’t be recovered. 

I’d never heard of glaucoma before. There was no internet back then, so I relied on hospital leaflets to understand what was happening and what the treatment involved.  

During the pandemic, I continued to be monitored and receive treatment throughout. There were more cancellations and rescheduling of regular appointments but I didn’t think it had a strong detrimental effect on my care. 

I’ve got a 12-year-old son, and I do worry that he may inherit the condition. Because of my condition, my family are entitled to free eye tests but I’d encourage everyone to get regular eye tests. They’re quick, painless, and if glaucoma is caught early, it can usually be managed with drops or other treatment. The earlier it’s picked up, the better the chance of avoiding more invasive procedures. I know the word glaucoma can sound scary, and people often fear they’ll lose their sight. But I believe that with proper treatment, that’s quite rare.  

I first heard about Glaucoma UK several years ago when I was looking for local support groups. Unfortunately, I could never attend any in person as they were during working hours. So, I searched online for advice and support and came across Glaucoma UK. 

I’ve found the Health Unlocked forum useful. I can ask questions at any time, and I’ve always received useful replies – whether from Glaucoma UK themselves or other forum members. Sometimes I’ve even been able to reassure others by sharing my own experiences. It’s such a supportive environment, and no one ever makes you feel like your questions don’t matter.  

If you’ve just been diagnosed with glaucoma, my advice would be to make sure you get all the facts. If you’re feeling overwhelmed, take someone with you to appointments – they can help take in the information. Try not to rely too much on Google, as some of what you’ll find might be alarming or not relevant to your own situation. If you can, talk to others with the same condition – it can really help ease your fears. And if that’s not possible, make the most of the excellent forums and resources available online.

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