My experience with glaucoma

By Rebecca Simpkins, individual giving executive at Sightsavers.
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When I was very young, my parents noticed that my pupils were oddly shaped. Despite being told that nothing was wrong, and things would settle down, they were concerned about my eyes.

Not unusually, we went to a baby swimming class. In the pool with his two girls was an ophthalmologist called Tor, and my parents asked him about my pupils. He told them: “It might be nothing at all, but it looks like something called glaucoma. If I were you, I would put pressure on your GP to get a referral.”

I was diagnosed with bilateral congenital glaucoma. There was no family history of the condition, which can be a risk factor, and no other reason to suspect that I might have it. I was 18 months old when I had my first operation.

Glaucoma is often referred to as the silent thief of sight because it typically doesn’t cause symptoms until the condition has progressed, and some vision loss has already happened. It’s the most common cause of irreversible blindness worldwide.

The early years

Years of medication, appointments, procedures and operations followed. By the time I was 12 years old, I’d had a total of seven trabeculectomy operations to lower the intraocular pressure in my eyes, which is common in glaucoma. (And yes, I was pretty chuffed that I knew the fancy word for my operation!)

Over the years, I became familiar with the numbers associated with eye pressure, especially what was considered good or bad in my case. Ahead of each hospital appointment came a slight, looming dread as to what they would be this time.

My condition had some obvious impacts on my life growing up, mainly having to take time out of school for appointments and occasional operations. For the most part, I don’t remember it being too bad, but as I got older, it was frustrating at times not to be ‘normal’.

I have some lovely memories of attending glaucoma appointments with my parents: playing ‘I Spy’ in the hospital corridor with my mum, or joining my dad in the office before the appointment. As I got older, a visit to the bookshop near the hospital became a treat and, a true child of the 1990s, it was all about the Goosebumps books. I still have my collection, and I think I have amassed about 100 of them.

I was incredibly fortunate: aside from light sensitivity and needing to wear glasses, my vision wasn’t affected, and my optic nerve remained healthy. Because my parents had persisted with their concerns, and we lived where we did, my glaucoma was caught early and followed up – nothing creeping or silent about it for me! It was quite literally under a slit lamp spotlight on a very regular basis.

Moving countries, and a surprise diagnosis

I grew up in Norway and moved to the UK when I was 19, so my initial diagnosis, early treatment and monitoring happened in Norway. Like the UK, the Norwegian health service is good, and I was extremely lucky to be under the care of several incredibly skilled and passionate individuals.

Since coming to the UK, I’ve moved around a bit, so I’ve seen several different ophthalmologists. I remember when I was first seen in Oxford, in my mid-20s: the ophthalmologist had a couple of medical students in the room and was telling them some background on my case. “Rebecca has Axenfeld-Rieger syndrome with glaucoma…”

Huh? Axen-what-now? This was news to me! It turns out that the genetic disorder was the cause of my glaucoma. Cue lots of Googling… As a result of the Axenfeld-Rieger, the anatomy of my eye is a bit weird. In the left eye especially, everything is sort of squashed together, and – until recently – there were bits of the iris attached to the cornea among other things.

Fast forward to my late 20s, and I needed surgery again. This time, a trabeculectomy was no longer a viable option, so a tube shunt was implanted. The tube shunt is a really cool bit of kit, and I was quite excited about it at the time. Unfortunately, due to the placement of this (see the aforementioned tricky eye anatomy), my vision was affected immediately after surgery, and eventually my cornea decompensated.

If you imagine a fogged-up car windscreen that doesn’t clear, that’s essentially what happened. In the space of five years, I’d gone from fairly normal vision to the delightful term ‘counting fingers’. I couldn’t even read the giant letter at the top of the eye chart, or the one on the laminated bit of paper they held a metre from my face. My left eye had become pretty much useless.

What does the future hold?

Since the first tube shunt, I’ve had two more – I do only have two eyes, honest! Most recently in 2025, I had a combined operation on my left eye featuring a corneal graft, cataract removal and a procedure called anterior synechiolysis (the technical term for peeling an iris off a cornea).

As I write, the last operation was almost six months ago. It was a success, the recovery so far has gone well, and my vision is steadily improving. My glaucoma is still unpredictable, and I’m on drops daily. The corneal graft surgery has required steroid drops as well, which I’m still taking several times a day and will be for the foreseeable future. An ongoing challenge is balancing the need for steroids to avoid rejection of the new cornea with the risk of the same steroids causing the eye pressure to increase.

It’s a funny thing. I don’t remember as a child really considering my glaucoma to be frightening, probably because it had always just been part of life. But as an adult, it’s different. I think once you get older, the reality of life kicks in. Fears around being able to provide for yourself and your loved ones can take over. Even living in a country with universal healthcare and a welfare system, thoughts of ‘what if’ are there. I’m resigned to there being sight loss in my future, but when, to what extent, and the effect are all unknown factors.

Since joining Sightsavers and hearing some of the incredible stories of people with sight loss around the world, I can’t help but wonder how different my life might have been if I’d been born somewhere else. I feel incredibly lucky – my glaucoma wasn’t silent. Do I wish things had been different? Of course I do. I don’t think my underlying fear of what the future holds will ever go away, and I would love to be without it.

My experience has given me a unique opportunity to support other glaucoma patients who are coming to terms with their diagnosis or who have questions about impending treatments and what the future might hold. And I’m incredibly privileged that, through my work, I get to play a small part in righting the injustice for those who haven’t been as fortunate as me.