A life shaped by the consequences of myopia – Q&A with Elaine Shaw

Myopia management is typically discussed in terms of refractive error, axial length, and the comparative efficacy of treatments. While this framing is necessary for clinical decision-making, it is also important to keep in mind that long-term consequences of myopia are real and possible,^1,2  rather than just a statistical risk. 

Elaine Shaw's story illustrates what that risk can mean in real life. Elaine (pictured above) is 66 years old and was diagnosed with high myopia and myopic macular degeneration decades before myopia control existed as a clinical option. She has received 25 anti-VEGF injections in her right eye and 20 in her left for the treatment of choroidal neovascular membranes. Her ocular history is also significant for macular chorioretinal scarring and posterior vitreous detachment. From a likely myopia onset at age 5, Elaine was only in her mid-20s when the first complications from her myopia emerged. In this Q&A, we speak with Elaine about growing up with myopia, the reality of living with its complications, and what she wants eye care professionals and parents to understand about the value of managing myopia to slow its progression while the time-limited window for intervention is open. 

Elaine: The first time I realised there was a problem with my vision was during my first eye test at school, when I was five years old. The test used a series of letter Es in different orientations, and we had a template that we had to hold up in the same direction. With my right eye, I could only see the top letter, so I guessed the rest. I think the person testing me assumed I didn’t understand what I was supposed to do, so my myopia was left undetected, and I didn’t get glasses at that stage. 

By the following year, I knew what to expect. This time the chart had proper letters, so I memorised them all the way down and recited them when it was my turn. They thought my eyesight was normal, and I continued doing that every year until I was 15.

Elaine: I had to adapt. I would always make sure I was sitting near the front, usually at the front desk, and really pay attention. Even then, I sometimes found it quite difficult to follow what was going on. I think I became very good at finding ways to manage without letting people know just how poorly I could see. 

As I got older though, it became harder to compensate. By the time I was around 15, I was getting ready to go to college and out into the big wide world, and things were becoming increasingly difficult for me to cope with. I instinctively knew that I couldn’t keep hiding it and that I needed to take action and get glasses.

Elaine: I was probably in my mid-twenties when I first realised there was a problem beyond short-sightedness. I went for an appointment with an optometrist, and they detected macular degeneration and referred me to the local hospital. It was quite an ordeal because I didn’t know what macular degeneration was. I remember the doctor talking to me about the possibility of losing my sight. I still get emotional when I go back and think about that experience.

My macular condition progressed slowly after that. I noticed small changes over the years, but the first major change was probably around 20 years after that initial diagnosis. While I was driving, I began seeing the backs of cars as though they were caved in and distorted, and I knew something wasn't right.

It was like something from a horror film: lying there with my eye clamped open and watching a needle coming towards me into my eye. Even though the injection itself didn’t hurt, that didn’t take away the fear. And I’ve had to go through that experience many, many times.

Elaine: My eye condition affects me all the time, every day. It’s the backdrop to my life. Bit by bit, year by year, a little more of my sight is ebbing away. It’s often the simple, everyday things that people don’t think about and just take for granted.

I had to stop driving during my working life as a medical secretary because I was having some very narrow misses. I also can’t see people’s facial features, including my own face in the mirror. I put my makeup on entirely by feel and then have someone check that there are no smudges. When people pass me in the street, I often need my husband to tell me who they are. Otherwise, I’ll smile and wave just in case it’s someone I know… so I do end up smiling at a lot of complete strangers!

Elaine: When I heard that something could be done to slow the progression of myopia, I was absolutely amazed. What a breakthrough for children today, so that hopefully their myopia won’t progress to the stage where it causes serious problems later in life. I wish it had been available when I was younger. For children today, I think it’s an absolute life changer.

For parents, a lot comes down to education. When you’re considering the cost of myopia control, I understand how that might be a part of decision-making. But having experienced significant vision loss myself, I see it from a very different perspective. There are so many everyday things I can no longer do or see in the way I once could. You can put a price on a pair of glasses or a box of soft contact lenses, but you can’t put a price on your sight. If more parents understood that these complications are a possibility, I think more would choose to take action.

• Retinal pathology is common in younger people with high myopia
• Clinical predictors of retinal detachment in high myopia
• Frequency and prediction of myopic macular degeneration in adults