Vol. No. Vol. 2418No. 19 27
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Wednesday, January 10, 13, 2021 2016 Wednesday, November
Focus on awareness BY SARAH MATTHEWS
H
orsham’s Erica Blake stood at traffic lights for almost 15 minutes last month, waiting for the familiar noise that accompanied the ‘green man’ to indicate it was safe to cross.
Any motioning by passing motorists went unnoticed, as did the fact the lights were not working, simply because Erica is recovering from eye surgery and her vision is on par with trying to see underwater without goggles. In a few months, Erica went from playing netball to being unable to cross a road safely, although she refuses the label ‘legally blind’. Erica, 45, and her sister Prue Beltz, 53, have both suffered from a degenerative eye disease, keratoconus, since their late teens. Keratoconus is an eye condition where the cornea – front window of the eye – thins and changes its shape. As the disease progresses, the normal round shape of the cornea distorts to a cone-like bulge resulting in significant visual impairment and, if untreated, blindness. Today is World Keratoconus Day and the Horsham sisters have decided to share their stories in the hope raising awareness will prevent others from suffering the same fate. At 18, Prue had just started university in Warrnambool when classmates noticed she was squinting and asked if something was wrong with her eyes. “I’d had a medical before I went off to university and everything was fine, but a couple of months in, I couldn’t see the board properly,” Prue said. “I started off in the second-back row and worked my way forward to the second row.” Prue put off seeing an optometrist until she returned home to Horsham at Easter. “Mum got me in to see Bob Liddy on Easter Tuesday. He thought I was probably just short-sighted, but he would do the tests anyway,” she said. “Afterwards, he told me I should call my mum to come down for the results,
which obviously wasn’t a good sign. “Then he told me I had a disease called keratoconus and would probably go blind. “That was a real kick in the guts.” Erica was diagnosed in year 12, aged 17, after her mother noticed she was squinting and took her to an optometrist. “That led to a specialist appointment and it turned out I also had keratoconus,” Erica said. “It was already quite progressive and should have been diagnosed earlier, but it is tricky to diagnose.” Both sisters have endured years of optometrist and ophthalmologist appointments, struggles with glasses and contact lenses, steroid-based medication and invasive surgeries, all in the pursuit of ‘some form of functional vision’. They have had corneal transplants in both eyes, along with ‘countless’ surgeries to retain the life of the transplants, which eventually deteriorate. Prue said she was booked in for a regraft in February and later this month would pick up contact lenses that ‘fingers, toes and everything else’ crossed would restore her vision, at least well enough to safely drive a vehicle. “I was hoping to get 30 years out of my corneal transplant and I’ve had 26. They say if it lasts 10 years it’s a success, but obviously the longer, the better,” she said. “The surgery itself doesn’t hurt – I had both transplants under local anaesthetic – but recovery is painful.”
‘Horrendously expensive’ Along with being physically debilitating, Prue said keratoconus also carried a significant financial burden. “It’s a horrendously expensive disease to have,” she said. “One year I had four complete glasses changes, which cost $700 a lens. “The contact lenses I’m about to get are on the cheaper end. They cost $500 and might not work. “Then there’s travelling to Melbourne for all the appointments and surgical procedures. I spend between $1500 and $5000 a year just so I can drive.”
Erica agreed, saying she spent between $4000 and $5000 a year trying to maintain some form of functional vision. She said very little was covered by Medicare or private health insurance and any hope of achieving change depended on research. This time last year, Erica attended a Centre for Eye Research Australia, CERA, webinar and became inspired to advocate for the organisation’s keratoconus research program. On Monday, she was a special guest at this year’s online forum. CERA keratoconus project lead Dr Srujana Sahebjada also spoke, d i s cussi n g how the centre’s research was working to better understand the risk factors, early detection and using artificial intelligence to improve overall understanding and better management of keratoconus. Dr Sahebjada said she was pleased to see patients such as Erica willing to share their stories and experiences. “Not many people are aware of the condition and I think people are more likely to listen if the information comes from a patient,” she said. A recent study showed one in 84 Australian 20-year-olds has the condition, with the global prevalence rising five-fold from one in 2000 in 1986 to one in 375 in 2016. “We’re not really sure if the condition is increasing or if advancements in technology has enabled us to pick up the condition easier,” Dr Sahebjada said. “One thing we know for sure is that keratoconus is not a rare condition as
Prue Beltz and Erica Blake
it was once thought, even as close as five years ago.” Dr Sahebjada said keratoconus was difficult to detect and primarily affected young people, unlike more well-known eye conditions affecting older generations, such as diabetic retinopathy and macular degeneration. “A big concern with keratoconus is people have to go for frequent eye check-ups, because the cornea is constantly changing,” she said. “Visiting specialists, which usually requires significant travel and
expense, can have a big impact on a person’s quality of life.” Dr Sahebjada said the disease was progressive and its main treatment was a corneal transplant. “It is the only way to restore vision but it depends on the patient as to how well the graft is accepted,” she said. “Also, it doesn’t last forever. The Australian donor registry reported a keratoconus patient could need five corneal transplants in their lifetime.” Continued page 5
ININTHIS ISSUE • Crisis accommodation plan • Quantong residents stand strong • Football-netball action THIS ISSUE • Peaks trail opening • ‘Remember to remember’ • Matches close in tennis Phone: 03 5382 1351 Read it online: www.theweeklyadvertiser.com.au
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