A fight for sight

Judy O'shanassy knew something wasn't quite right when her vision got a little fuzzy.

She had been using eye drops for glaucoma for a fair while, but about three and-a-half years ago something was happening with her sight that she knew was different.

"I saw my optician and he said then that he thought I might be in trouble."

The "trouble" was macular degeneration, a disease that is the biggest cause of blindness in New Zealand.

What's worrying Macular Degeneration New Zealand (MDNZ) is the disease isn't given the attention it demands. If that continues then it MDNZ reckons we will be faced with an uncontrolled epidemic by 2020.

MDNZ estimates one in seven people over the age of 50 in NZ are affected. If your family has a history of MD then there's a 50 per cent chance you will develop the disease. It's three times as common as dementia, nearly as common as heart disease and half as common as obesity, and it's the leading cause of blindness in this country.

The disease affects the macula which is the central region of the retina - the light-sensitive inner layer of tissue at the back of the eye. The retina processes visual images, while the macula takes care of our central or straight-ahead vision.

As the eye ages the macula deteriorates and the central sharp vision that is used for seeing detail is gradually lost. That means tasks such as reading, driving and recognising faces become more difficult. Although it can lead to legal blindness, macular degeneration does not result in total blindness.

There are two types of MD - wet MD and dry MD. Wet MD comes on suddenly and usually means more severe loss of vision. It occurs when abnormal blood vessels grow under the retina and leak fluid or blood into the macula region. Dry MD is the most common form of macular degeneration and brings a more gradual loss of central vision.

Specialists say early diagnosis is crucial to prevent vision loss as early intervention is key. There are procedures that can slow and in many cases stop vision loss, but for many it will be too late. The bottom line is that if untreated the majority of people with wet MD become functionally blind within two years.

Dr Dianne Sharp, a leading ophthalmologist and chair of MDNZ, said the tragedy is that too many people are needlessly losing their sight.

A major reason could be that many simply don't know about MD. A recent poll showed that 41 per cent of Kiwis didn't know what macular degeneration was.

She said people mistakenly think that blindness is an inevitable consequence of getting old: "But that's no longer the case, provided that people know the warning signs of macular degeneration and seek treatment early."

She said there are three main drugs used in the treatment and the cheaper ones attract full subsidy while the newer and more expensive ones get are part-funded.

"But the problem is so many people don't know anything about the disease and this is what we're working at to change," Dr Sharp said.

As soon as she was diagnosed with wet MD, Judy O'Shanassy was seen by a specialist and started on a monthly course of injections. Not injections into her arm or near the eyes - injections directly into her eyes.

Judy said "I soon got sick of that" so when the option of laser treatment as suggested she jumped at it. Unfortunately it left her left eye irreparably damaged.

Then she was sent to another specialist in Palmerston North and she's been seeing him for the past two years.

She sees that specialist every two months and is being treated with a more recent drug called Eylea. While the public health system pays for one treatment, each alternate treatment she pays for. And at a four figure sum it's not cheap.

"He was giving an injection in my left eye every month for four months but decided it was beyond saving. So now I'm getting the injecting in my good eye, the right eye," she said.

Vision in her left eye is all but gone. She can't discern a person's faced even if they're only a metre or two in front of her. She's still capable of driving but is reliant on that good right eye.

"The injections are important but must happen regularly. If we're a week over the due date the vision starts to get a little bit fuzzy," she said.

The prognosis for her good eye is positive.

"It's holding and that's why I'm continuing with the injections. The specialist always says to me I won't go completely blind but really we don't really know. The injections are not very nice, but they've saved my sight."

If you think getting regular injections directly into your eyeball is a scary prospect, you're right.

"I used to freak out at first, but I've got used to it," Judy said.

The procedure involves having drops put into her eye to numb the area. Then a mask is put over her face and her right eye clipped open so she can't blink.

"Then he puts a needle into the side of my eye. It's uncomfortable. Well, it's awful really. Then after a few seconds he comes in directly through the front of my eye and the needle goes right to back of the eye," she said.

She gets to Palmerston North on the health shuttle because she certainly can't drive after the treatment. And the 24 hours after those injections is a painful legacy.

"I live on painkillers for the next day. You know you've had a needle in your eye."

It's not a treatment for the squeamish, but for Judy it's about keeping her sight.

"I didn't understand what it was at first but talking to other people who have it and reading about it online was a help."

But she has a simple message to others - make sure you get your eyes tested regularly.

"Maybe I was more suspect to getting it because I'm a diabetic, but regardless everyone should get their eyes checked. Don't leave it because that could be the worst thing you ever do."

There are an estimated 20,000 Kiwis like Judy O'Shanassy who have been diagnosed with wet macular degeneration. And while the drugs she and others receive aren't a cure, they arrest further vision loss.

Judy acknowledges she has to consider the worst outcome but she's positive and determined she'll be staying in her own home. "But I know that if my sight does go then I'll have to make changes."

- MD Awareness week has just finished. Its theme was "Early detection saves sight".