A uveitis diagnosis during childhood set SHELLEY KLINE on a challenging life trajectory. Thankfully, she had an ophthalmologist who remained in her corner for almost 40 years. Now, she’s paying it forward with a scholarship.
Behind Ms Shelley Kline’s eye patch is a story of courage, determination and resilience. What started with a devastating uveitis diagnosis as an eight-year-old spiralled into a years-long fight to preserve her vision, debilitating pain and the difficult decision to ultimately remove her eye.
There’s been some dark moments, but throughout her life legendary Australian ophthalmologist Professor Frank Billson AO has – next to her family and husband – been her most trusted advisor, guiding her through the major decisions concerning her right eye and taking a genuine interest in her life.
Although Prof Billson has roots in Victoria, including deep ties with The Royal Children’s Hospital (RCH), by the time Kline came into his care he was practising in NSW. She was at primary school, visiting a local ophthalmologist once a week in Melbourne for monitoring, but flying up to Sydney with her mum to see “Prof”, as she fondly refers to him, for more complicated care. Her dad was often working but would join when he could.
“I remember we’d be sitting for hours waiting to see him, and you understood why as soon as you walked through the door because he spent so much time with each person, treating you like a human being with so much empathy and compassion. He had a beautiful demeanor and that’s why he was so well-regarded,” she recalls.
“He also taught me to not let these conditions stop you from achieving anything you want to. It was the best piece of advice that still sticks with me today.”
Kline was in Prof Billson’s care for almost 40 years. To honour his contributions to ophthalmology, in 2021 she created the Professor Frank Billson Research Scholarship at the RCH. The annual grant gives clinicians at the hospital’s Ophthalmology Department the opportunity to advance research into paediatric eye conditions. This scholarship, solely dedicated towards advancing research generated within the RCH ophthalmology department, is the first of its kind.
Kline was given a $250,000 target that would allow the RCH Foundation to fund the annual scholarship in perpetuity, but through her fundraising efforts she has eclipsed this.
“I’m determined to reach a target of $500,000 raised and I’m almost there. With such a significant amount of money towards the scholarship, the ophthalmology team can plan for research projects in the future and leverage from money raised for further funding,” she says.
It’s beyond anything she expected, and with Prof Billson now retired in his 90s, she’s proud to have set up the scholarship in his lifetime, preserving his legacy indefinitely.
“I’ve done this to honour my professor. Research and educating the next generation meant so much to him, this is my way of saying thank you for everything he’s done for me,” Kline says.
“The RCH is one of the best paediatric hospitals in the world. But the difference between a good hospital and great one is philanthropy. Government funding covers operational costs, so I want to ensure that with this scholarship, we can have a positive impact on as many children as possible with eye conditions.”
A constant in her life
At the age of eight, Kline was living a normal childhood. One day she reported feeling unwell. It seemed innocuous at first, but she was referred to several specialists before an ophthalmologist delivered the diagnosis.
“I remember my mum crying because the eye doctor said that I had an autoimmune disease called uveitis, which we didn’t know much about. I was just a child and I never in my life thought that it would impact me for so long.”
Her family were determined to find answers, travelling to San Francisco to visit a designated clinic.
Soon, the legendary Professor Gerard Crock, Australia’s first professor of ophthalmology based at the Royal Victorian Eye and Ear Hospital, introduced her to Prof Billson as one of the only specialists in Australia with uveitis expertise.
Prof Billson has a long and distinguished career in ophthalmology that began in Melbourne. He has long standing ties with the RCH, including as head of ophthalmology for seven years in the 1960s. His research and clinical interests have had a major focus on neonatal and paediatric ophthalmology and during his time at RCH, its expertise in paediatric ophthalmology became internationally recognised.
Later he moved to Sydney to become Foundation Professor of Clinical Ophthalmology at the University of Sydney, setting up the Save Sight Institute. He spent almost 25 years at the Sydney Eye Hospital (SEH) and Royal Prince Alfred Hospital. Plus, he co-founded Foresight Australia in 1978, a not-for-profit, and established Sight for Life Foundation supporting SEH’s registrar training program.
Wearing so many hats Kline says it is remarkable to consider how much time he had for her.
Uveitis has been a life-long fight with many downstream effects. The diagnosis meant she couldn’t distinguish pain or feel changes in her eye. Concerned about glaucoma, she saw an ophthalmologist weekly who managed the inflammation and checked the intraocular pressure (IOP). Her pupil needed to be constantly dilated and she remembers being teased for having “different coloured eyes” and wearing spectacles.
“You didn’t see a lot of kids with glasses back then, and the frames were always daggy. I was so embarrassed. My parents did everything they could to help me and made sure that I had the best care. We travelled the world to see the best doctors and I’m always very grateful for that,” she says.
Along the way, Kline learned some interesting facts about her condition: that non-infectious uveitis was more common in girls, and when faced with big changes in her life, it could go into remission.
“I’ve got three children and every time I was pregnant, I had no pain or issues. It’s like almost like my body protected me from it,” she says.
“We also discovered that you often don’t get blessed with one autoimmune disease, but two. When I was 12 years old, I had a skiing accident and came back to Australia for an arthroscope and that’s when we found out I had juvenile rheumatoid arthritis too.”
Regardless, Prof Billson continued to play in a role in her life. Even when Kline moved to Israel for seven years – suffering a major uveitis attack while there – he was only ever a phone call away.
But her affected eye continued to deteriorate. The IOP was extremely low, and the extreme pain and medication burden were hard to manage. She underwent three procedures in quick succession to save it, but there was little functional vision left. She consulted Prof Billson and decided enucleation was the best option.
“It was very hard time because I was in so much pain and my dad was passing with cancer,” she recalls.
“I wore a brilliant prosthesis for a year and it helped to alleviate some issues. But then I developed giant capillary conjunctivitis (GCC), an inflammatory reaction to a foreign body that feels like razor blades when you blink. We couldn’t get it under control with medication, and I decided to take it out and felt much better without it.”
Despite this, Kline still struggles with health issues stemming from uveitis. GCC impacts her occasionally, and she suffers from central sensitisation. There’s also painful peripheral nerve damage around the eye. Fortunately, a mother from her children’s school works in fashion and designed strapless cotton eye patches that stay in place with micropore tape. She’s also found some ultra-light glasses, and worked hard to find a good GP, rheumatologist and a psychologist to help manage the mental load.
“Sometimes I think I should pat myself on the shoulder, but I am hard on myself. This health condition is debilitating, so I’m not in a paid job and I can’t do everything that some other mums can. But I have amazing support from my husband (Adam Joel); he’s always backing me up and cheering me on to be positive. My brother, Gideon, is someone who never complained when the focus was on me growing up and he still is so concerned about my health,” she says.
“My philanthropy work is my passion. I’m excited for the challenge of fundraising and proud of what we have achieved so far. I love meeting and talking to people and telling them about Professor Billson and the impact he has had on my life, and many others.”
NOTE: A mini documentary, funded by Cooper Investors, on the Professor Frank Billson Research Scholarship has been released and can be accessed via www.rchfoundation.org.au/professor-frank-billson-research-scholarship/
To donate, visit www.rchfoundation.org.au/donation/frankbillson/
Professor Frank Billson Research Scholarship recipients
Cathy Lewis and Dr Anu Mathew (2024-25)
They are designing and implementing online education and collaboration modules to upskill optometrists in paediatric eyecare. It’s hoped the initiative will see some children receive all their eyecare locally, while others will participate in a collaborative model of shared care between the local optometrist and RCH. Both models of care will increase access to eyecare in metro and regional Victoria and reduce the need for families to attend the RCH eye clinic, saving them time and money. It will also improve access to the RCH eye clinic for patients unable to be managed in the community.
Dr Sandra Staffieri (2022)
Together with Dr Rod O’Day, ocular oncologist, and Dr Olivia Rolfe, they reported the treatment burden for children with unilateral retinoblastoma and compared the outcomes for Victorian children who received globe-sparing treatment, when safe to do so, versus primary enucleation. This work supports the decision-making process for parents when their child receives a retinoblastoma diagnosis, empowering them to make a fully informed decision including the implications of each treatment option.
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