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Joan’s story

Joan inherited glaucoma from her father, who went blind from the disease at the age of 80. She always knew that it was likely she would develop glaucoma because of her strong family history of the disease.

My father had glaucoma and so there was a distinct possibility that I would too.

The raised pressure in my eyes was first noted in 1995, and I was prescribed eye drops to lower it. The threshold for treatment was then raised and treatment stopped, before being restarted again several years later.

I was diagnosed with glaucoma in my left eye in 2015 during a routine appointment at the eye clinic. I had already lost some sight but was unaware of it. A couple of years later, I was diagnosed with the disease in my right eye, by which time I had lost some sight in that eye too. Fortunately, I am not aware of any sight loss as my brain fills in the gaps.

I knew that it was extremely likely that I would develop glaucoma because of the strong family history. My father had glaucoma and so there was a distinct possibility that I would too.  My sister also has the disease. This meant that I knew a lot about it, although I didn’t know about normal tension glaucoma, which is what my sister and I have inherited from our father.

I remember being told about my diagnosis in a very matter-of-fact manner. I was asked if I wanted laser treatment or more eye drops. As I had no idea about the merits of either treatment, I sought the doctor’s advice. He said that laser was usually more effective in the case of very high pressure. As the pressure in my left eye was within normal limits, he recommended more eye drops. Unfortunately, the new drops made my eye very sore. I was unable to make an appointment at the eye clinic and so arranged a private appointment with my consultant. He referred me to his colleague, whose area of expertise was glaucoma, and within a month I’d had a trabeculectomy on my left eye. I’ve since had another one on my right. Thanks to the surgeries, the pressures in both eyes are now very low, much lower than could have been achieved using drops. I am aware that keeping the pressure as low as possible is the only treatment. One thing I am delighted about is that I no longer need to use eye drops.

I try not to think about my eyesight deteriorating as I get older, and I certainly don’t take my sight for granted anymore. As I have glaucoma in both eyes, I must have a DVLA eye test every three years.

My father’s glaucoma was only diagnosed when he was in his sixties, after he had a disc haemorrhage and lost sight in one eye. He was totally blind by the time he reached the age of 80, in 1986, despite having always attended eye appointments and being very conscientious about using his eye drops. My sister has now almost lost sight in one eye but thankfully she does not have glaucoma in the other eye.

My two sons have always known that they are at risk of developing the disease. They will start being monitored at the optician’s when they are forty.

It’s been helpful to have the most up to date information about glaucoma on the glaucoma UK website. I’ve also taken part in a couple of research studies which were asking for volunteers in the glaucoma UK magazine. The first was about cortisol levels on waking, and the second was to test the feasibility of field testing at home.

I would encourage everyone to have their eyes checked regularly at an optician’s. And if you’re newly diagnosed with glaucoma, my advice for you is to be conscientious about using your prescribed eye drops, and to always attend your appointments.

The Glaucoma UK Podcast Artwork

You can hear Joan share her story on The Glaucoma UK Podcast. Find out about her diagnosis journey, how the disease runs in her family, and the different treatments she’s experienced to help manage her glaucoma.