Age-related macular degeneration (AMD) is the leading cause of vision loss in people over 50. It\u2019s 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\u2019s faces. There are two types: dry AMD, which progresses slowly, and wet, which can lead to more rapid vision loss.<\/p>\n
Anderson was told she would need intravitreal (in the eye) injections every six weeks as treatment.<\/p>\n
\u201cI got one [injection] there and then, which was pretty confronting, because there\u2019s not one injection, it\u2019s two – an injection of local anaesthetic and then the drug.<\/p>\n
\u201cI went home absolutely terrified.\u201d<\/p>\n
She also experienced symptoms of Charles Bonnet syndrome, which causes hallucinations that come with vision loss.<\/p>\n
\u201cYour 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\u2019re going mad on top of everything else.\u201d<\/p>\n
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 \u201camazing\u201d.<\/p>\n
\u201cThey gave me lots of information … there are still not enough people knowing they should make sure their eyes are checked for eye health. I\u2019d just thought you go and get your vision checked.\u201d<\/p>\n
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.<\/p>\n
She switched to the drug Eylea (aflibercept), which has helped prevent bleeds. <\/p>\n
\u201cBut 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.\u201d<\/p>\n
From this month, that drug, Vabysmo (faricimab), is publicly funded for eligible Kiwis living with wet AMD.<\/p>\n
It\u2019s 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.<\/p>\n
Anderson isn\u2019t sure she\u2019ll meet the criteria for Vabysmo, but says it\u2019s \u201cfantastic\u201d to have another treatment option available.<\/p>\n
\u201cI\u2019m hoping I might be eligible … I\u2019ve only got a little bit of sight left, and I don\u2019t want to lose it.\u201d<\/p>\n
Needing fewer injections would make a \u201chuge difference\u201d, she says.<\/p>\n
\u201cEvery time they put a needle into your eye, there\u2019s a risk of infection. You need this less often, so you\u2019ve got less risk of infection, less cost getting there.<\/p>\n
\u201cIf you\u2019re blind, you have to find a way to get there. And for two days afterwards, you\u2019re limited in what you can do because of that risk of infection. I can\u2019t go to my aqua move classes at the pool, I can\u2019t garden … your eyes can be very sore, and you can be very miserable.\u201d<\/p>\n
That\u2019s 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\u2019s had to learn to recognise them by their voices, silhouettes and the way they walk.<\/p>\n
\u201cHaving to deal with your pride, having to say \u2018I\u2019m blind\u2019, because if I go shopping, I can\u2019t read prices on labels. I can\u2019t wear makeup. I was wearing makeup, and my daughter informed me that it had a very startling marbled effect,\u201d she jokes.<\/p>\n
\u201cI 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\u2019t see them.<\/p>\n
\u201cThe nice romantic dinner in a darkish room … forget that. I need the brightest light otherwise I can\u2019t see what I\u2019m doing.<\/p>\n
\u201cOne of the things that I really hate is two-factor authentication. It\u2019s a nightmare; by the time I find a magnifying glass and read stuff on my phone, I\u2019ve been locked out of my account.\u201d<\/p>\n
There are hidden costs that come with blindness, she says: replacing her computer and TV with bigger screens, upgrading to LED lighting, \u201ctalking scales\u201d for her kitchen and bathroom. <\/p>\n
She\u2019s 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 – \u201ca hard pill to swallow\u201d.<\/p>\n
\u201cThat loss of independence is hard. I\u2019m an impulsive person, and I have to rely on other people to take me places. I\u2019ve just recently realised that I\u2019m absolutely terrified of crossing a busy road on my own. I just freeze. <\/p>\n
\u201cIt\u2019s very scary, and I\u2019ve started to understand a little bit what people mean by panic attacks.\u201d<\/p>\n
Despite all this, Anderson says \u201cyou have to be able to laugh at yourself\u201d.<\/p>\n
\u201cLike when you see things that aren\u2019t there, and crazy things, and when you walk into the men\u2019s loos – I\u2019ve been into so many men\u2019s loos because they don\u2019t always make the skirts wide enough.\u201d<\/p>\n
There\u2019s not enough awareness about what it really means to be blind, she says.<\/p>\n
\u201cI\u2019m constantly told, \u2018But you don\u2019t look blind\u2019 … a lot of people don\u2019t realise there are blind people in the community.<\/p>\n
\u201cThey don\u2019t understand if you can see anything, because people think that if you\u2019re blind, you\u2019re black blind – there\u2019s nothing. And that\u2019s very rare.\u201d<\/p>\n
Now, she wants to urge others to go for regular eye tests and health checks.<\/p>\n
\u201cPeople need to push for answers and be prepared to advocate for themselves.\u201d<\/p>\n
Macular degeneration affects around 219,000 Kiwis.<\/p>\n
Ophthalmologist and retina specialist Dr Francesc March says though it\u2019s so common, it\u2019s not always easy to recognise the signs.<\/p>\n
Dr Francesc March is an ophthalmologist and retina specialist.<\/p>\n
\u201cSome patients cannot be diagnosed in time, because sometimes [they\u2019re] not self-aware,\u201d he tells the Herald.<\/p>\n
\u201cEven if they are, sometimes they don\u2019t go to receive healthcare on time, or the healthcare system is not responding in time to the needs of the patient.<\/p>\n
\u201cWe know it\u2019s 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.\u201d<\/p>\n
The standard of care treatment for macular degeneration is intravitreal injections, often Avastin.<\/p>\n
\u201cAvastin 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\u2019s a delay in administering the treatment, this can [lead to] vision loss,\u201d March says.<\/p>\n
\u201cUnfortunately we know that around 30% of the patients can get lost in the system or delayed, and sometimes it\u2019s because the system is not as efficient, people can have other diseases, health problems, family issues and then can\u2019t go to receive the treatment.\u201d<\/p>\n
There are two advantages to Vabysmo, he says. <\/p>\n
\u201cOne 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.\u201d<\/p>\n
If patients require fewer injections, that also frees up appointments for patients with other concerns. <\/p>\n
\u201cEverybody knows somebody with [macular degeneration]. This is something that can make life better for a lot of them.\u201d<\/p>\n
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\u2019 real-life stories.<\/p>\n","protected":false},"excerpt":{"rendered":"Two months later, she was driving to work and realised that she couldn\u2019t see the cars in front…\n","protected":false},"author":2,"featured_media":174121,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[50543,5195,112033,112031,3401,1872,15313,2082,25812,2964,134,37772,10109,19133,2225,112030,117,111,139,69,2847,40547,61,112032,21732],"class_list":["post-174120","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-anderson","tag-be","tag-bronwyn","tag-degeneration","tag-drug","tag-face","tag-feeling","tag-for","tag-funded","tag-half","tag-health","tag-horrified","tag-husband","tag-looking","tag-loss","tag-macular","tag-new","tag-new-zealand","tag-newzealand","tag-nz","tag-only","tag-remembers","tag-to","tag-vabysmo","tag-vision"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/174120","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=174120"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/174120\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/174121"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=174120"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=174120"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=174120"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}