Matthew’s story

To anyone who has been newly diagnosed with glaucoma, my advice is to always follow doctors’ orders, attend appointments regularly and take eye drops exactly as prescribed.

When I was diagnosed with open-angle glaucoma during a routine eye test in April 2021, I didn’t think much of it. I wasn’t too concerned and didn’t fully grasp what the diagnosis meant for my future. At the time, I received very little information and wasn’t sure what to expect.

My glaucoma is only in my left eye, and there are no signs of glaucoma in my right eye. Although I have a family history of glaucoma, doctors suspect that mine was caused by a head injury I had when I was 12 years old. Since then, I have also experienced migraines. In the months leading up to my glaucoma diagnosis, I was admitted to hospital three times with stroke-like symptoms which were ultimately diagnosed as a type of migraine. Luckily, since starting treatment for my glaucoma and bringing my eye pressure under control, these symptoms have not returned.

The diagnosis itself was quick. In 2022, I was with the NHS for regular monitoring, but there was significant delay in being seen, which led to an emergency admission.

Although the pandemic didn’t affect my diagnosis or treatment directly, I believe the initial delays for monitoring and treatment within the NHS certainly had an impact on my vision.

Living with glaucoma has had a massive impact on my life. I had to give up my job as a sales manager, as well as hobbies that I loved, such as performing in a party band and playing football. I was also a competent driver, covering up to 100,000 miles per year with work, but now I only drive short distances in daylight. Since my diagnosis, I’ve struggled with anxiety and depression. I’ve been on many types of treatment, including eye drops, Selective Laser Trabeculoplasty (SLT), Cyclodiode laser treatment, trabeculectomy, numerous needling procedures and a Baerveldt implant.

My message to others is that there are many different types of glaucoma, and it seems that everyone responds differently to the treatments. I feel there is still a lot to learn, and I appreciate that my case is complex. But I think it is really important to help in any way I can to advance research and understanding of this disease. I found Glaucoma UK when I was searching for a glaucoma forum. I then joined the Glaucoma UK community on HealthUnlocked, which I really like. I have since used the helpline when surgeries were getting on top of me and the advisors were reassuring. I have never used the buddy scheme, although I have volunteered for it. I think it is nice to know that you are not alone.

To spread awareness of the disease, I have set up my own YouTube channel called ‘Glaucoma Pirates’ with the sole purpose of sharing my story in the hope that it might help others who are going through similar experiences.

My wife and children have been extremely supportive, but they would say that I’m not the same happy-go-lucky person I was before. I have let my close relatives know about the increased risk of developing glaucoma, which worries me slightly, but I’m glad that they will get free eye tests.

To anyone who has been newly diagnosed with glaucoma, my advice is to always follow doctors’ orders, attend appointments regularly and take eye drops exactly as prescribed. Even though I’m having a rough ride, I’m so grateful for the care I have received throughout.

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