Bronwyn Anderson has wet age-related macular degeneration and has regular eye injections to help preserve her remaining vision.
Bronwyn Anderson remembers looking at her husband and feeling “horrified” to see he had only half a face.
Around seven years ago, the retired organisational psychologist realised her eyesight was getting worse.
“At night I couldn’t do my needlework, tapestry, and knitting,” the 79-year-old says.
“I couldn’t read the phone book. I went away on a trip with my husband and I couldn’t read menus on planes, and clearly it was all getting worse.”
The first optometrist she saw told her that she “must be looking through the wrong part” of her glasses. “I was too busy to go and get another opinion.”
Two months later, she was driving to work and realised that she couldn’t see the cars in front of her if she closed one eye.
Anderson, who is based in Ōtaki, eventually visited her husband’s optometrist, who sent her straight to an emergency eye clinic in Wellington.
“I’d had a huge bleed [in my eye]. I was told I had macular degeneration, and it had turned to wet macular degeneration. And because I’d left it so long, there was scar tissue, and there was nothing they could do with it.”
Age-related macular degeneration (AMD) is the leading cause of vision loss in people over 50. Dame Judi Dench was diagnosed with the disease in 2012, revealing in an interview last month that at 90, she “can’t recognise anybody now”.
It’s a disease that damages the macula, the central part of the retina at the back of the eye which allows you to read, drive and recognise people’s faces. There are two types: dry AMD, which progresses slowly, and wet, which can lead to more rapid vision loss.
Anderson was told she would need intravitreal (in the eye) injections every six weeks as treatment.
“I got one [injection] there and then, which was pretty confronting, because there’s not one injection, it’s two - an injection of local anaesthetic and then the drug.
“I went home absolutely terrified.”
She also experienced symptoms of Charles Bonnet syndrome, which causes hallucinations that come with vision loss.
“Your brain is getting fractured pieces of information, and so it does its utmost to put them together and makes things [up] that are quite ridiculous ... you really do think you’re going mad on top of everything else.”
She wishes she had been warned about this earlier and says not enough information is available about AMD in eye clinics and opticians, though the charity Macular Degeneration New Zealand had been “amazing”.
“They gave me lots of information ... there are still not enough people knowing they should make sure their eyes are checked for eye health. I’d just thought you go and get your vision checked.”
Since then, she has lost more of her eyesight and been pronounced blind. She continues to have injections in both eyes every six weeks. The drug Avastin gave her back some vision, but has since stopped working.
She switched to the drug Eylea (aflibercept), which has helped prevent bleeds.
“But it works only on one of the proteins that causes the bleeding, and this new drug works on both, so it would be much better.”
From this month, that drug, Vabysmo (faricimab), is publicly funded for eligible Kiwis living with wet AMD.
It’s an injection given every four months, less frequently than other treatments. This could mean fewer eye injections needed, according to drug company Roche, freeing up resources, giving patients faster access to treatment and helping clinics meet growing demand.
Anderson isn’t sure she’ll meet the criteria for Vabysmo, but says it’s “fantastic” to have another treatment option available.
“I’m hoping I might be eligible ... I’ve only got a little bit of sight left, and I don’t want to lose it.”
Needing fewer injections would make a “huge difference”, she says.
“Every time they put a needle into your eye, there’s a risk of infection. You need this less often, so you’ve got less risk of infection, less cost getting there.
“If you’re blind, you have to find a way to get there. And for two days afterwards, you’re limited in what you can do because of that risk of infection. I can’t go to my aqua move classes at the pool, I can’t garden ... your eyes can be very sore, and you can be very miserable.”
That’s one of the many ways blindness impacts her life. For Anderson, the hardest thing is not being able to see her loved ones clearly - like her husband. She’s had to learn to recognise them by their voices, silhouettes and the way they walk.
“Having to deal with your pride, having to say ‘I’m blind’, because if I go shopping, I can’t read prices on labels. I can’t wear makeup. I was wearing makeup, and my daughter informed me that it had a very startling marbled effect,” she jokes.
“I went and got my eyebrows tattooed, so I could at least have something. I have to pay people to cut my toenails, because I can’t see them.
“The nice romantic dinner in a darkish room ... forget that. I need the brightest light otherwise I can’t see what I’m doing.
“One of the things that I really hate is two-factor authentication. It’s a nightmare; by the time I find a magnifying glass and read stuff on my phone, I’ve been locked out of my account.”
There are hidden costs that come with blindness, she says: replacing her computer and TV with bigger screens, upgrading to LED lighting, “talking scales” for her kitchen and bathroom.
She’s had to give up reading books and magazines and learn new technology such as voiceover to use her phone apps, and has had to forgo a trip to Malaysia with a friend - “a hard pill to swallow”.
“That loss of independence is hard. I’m an impulsive person, and I have to rely on other people to take me places. I’ve just recently realised that I’m absolutely terrified of crossing a busy road on my own. I just freeze.
“It’s very scary, and I’ve started to understand a little bit what people mean by panic attacks.”
Despite all this, Anderson says “you have to be able to laugh at yourself”.
“Like when you see things that aren’t there, and crazy things, and when you walk into the men’s loos - I’ve been into so many men’s loos because they don’t always make the skirts wide enough.”
There’s not enough awareness about what it really means to be blind, she says.
“I’m constantly told, ‘But you don’t look blind’ ... a lot of people don’t realise there are blind people in the community.
“They don’t understand if you can see anything, because people think that if you’re blind, you’re black blind - there’s nothing. And that’s very rare.”
Now, she wants to urge others to go for regular eye tests and health checks.
“People need to push for answers and be prepared to advocate for themselves.”
Macular degeneration affects around 219,000 Kiwis.
Ophthalmologist and retina specialist Dr Francesc March says though it’s so common, it’s not always easy to recognise the signs.
“Some patients cannot be diagnosed in time, because sometimes [they’re] not self-aware,” he tells the Herald.
“Even if they are, sometimes they don’t go to receive healthcare on time, or the healthcare system is not responding in time to the needs of the patient.
“We know it’s affecting around one in 10 people above 50 years ... we want to detect vision loss as soon as possible, because if we give early treatment, we have better outcomes.”
The standard of care treatment for macular degeneration is intravitreal injections, often Avastin.
“Avastin works, but one of the issues is that we have to do the injections every month. A lot of patients have this problem, so it takes a lot of resources helping these patients. And if there’s a delay in administering the treatment, this can [lead to] vision loss,” March says.
“Unfortunately we know that around 30% of the patients can get lost in the system or delayed, and sometimes it’s because the system is not as efficient, people can have other diseases, health problems, family issues and then can’t go to receive the treatment.”
There are two advantages to Vabysmo, he says.
“One is that they have to do fewer injections in the eye; as well, there are patients who may not be responding to the previous medications, and then we can help them. And what we want is to help people.”
If patients require fewer injections, that also frees up appointments for patients with other concerns.
“Everybody knows somebody with [macular degeneration]. This is something that can make life better for a lot of them.”
Bethany Reitsma is a lifestyle writer who has been with the NZ Herald since 2019. She specialises in all things health and wellbeing and is passionate about telling Kiwis’ real-life stories.