Jessica's story

I was born with congenital glaucoma and was diagnosed at around six weeks old. There was no previous history of the disease in the family, it was just a total clash of genes!

I was born a typical blue-eyed baby. My eyes were a little cloudy, but this was initially ignored. My mum became concerned with my behaviour, as I was crying all the time. She took me to see the doctor on multiple occasions but was always told I was just sensitive to light, or that I was an over-crier.

I was hysterically crying one day, and she couldn’t pacify me, so she called the health visitor for help. When they arrived, my mum showed them that if she closed the curtains and blinds, I immediately stopped.

They decided to run some tests. I was constantly being held up to the light so that doctors could see my eyes. I remember my mum often telling me that she was once in the room with two glaucoma specialists, two nurses and a doctor all crowded around me, trying to see into my eyes to figure out what was happening. As a child, I remember my consultant giving me 50p to buy sweets as a reward for behaving well during my sight test. I was treated by Moorfields up until the age of five, and then was transferred to Cardiff, where we live. My parents often remind me of what a nightmare it was going back and forth to Moorfields from Cardiff.

As an adult, I’ve had a Baerveldt Aqueous Shunt in my left eye in 2012, followed by cataract surgery in 2016. This year (2021), I’ve had re-location surgery on my Baerveldt Shunt.

Other than my symptoms, the impact of my glaucoma diagnosis on me has been minimal, but that’s because I’ve dealt with it my whole life. I just try to get on with my life and do fun things while I can. I think it affects my loved ones more, because there’s nothing they can do. And because it’s such a silent and invisible disease, I think they sometimes forget about it too. My parents are really supportive and always have been from the very start.

I often chat with my partner about the potential of our future children inheriting glaucoma. We’ve always been in the mindset of “if they do…they do”. At least I will have the experience and knowledge of living with the disease, and I also know all the best people to take my future child to for help. As my family and I have experienced, there is so much help out there for both parents and their babies. So, glaucoma will never stop me from having children. I remain optimistic that if my child does have glaucoma, it’s not the end of the world, because the disease has never stopped me from having a normal life.

I think it’s important to share the message that not all people with glaucoma are of the older generation. I am currently part of a glaucoma support group on Facebook, and a vast majority of the members are much older than me. Young people with glaucoma can often feel quite alone as it’s not considered a young person’s disease, so there’s always an element of surprise when I meet others on the support group who are a similar age to me. There’s always a feeling of instant familiarity. More often than not, the people I meet on there are newly diagnosed. Given my history, I try my best to offer them advice and ensure that they’re not feeling too nervous and scared about the disease. I also encourage them to trust the process that lies ahead of them, and to take their medication as instructed.

For the young people out there who, like me, are living with the disease and want to have children, all I can say is please don’t worry and try to keep positive. There’s always support out there for you, and you’re never alone. Technology is constantly improving and there’s so much help there. Look at me – I’m living a normal life despite having congenital glaucoma! Just because you have glaucoma, doesn’t mean that glaucoma has you. You’re still able to live a happy and fulfilled life.