Shelley Kline has spent four decades dealing with pain, medication, and traumatic procedures for her eye disease. She knows research is the key to better treatment and care for children and young people today.
Shelley, now 52, was diagnosed at the age of eight with uveitis, a form of eye inflammation that affects the middle layer of tissue in the eye wall. Uveitis is the term used to describe a broad number of inflammatory diseases that produce eye swelling and redness and destroy eye tissue.
In Shelley's case, the disease led to extreme pain and, eventually, enucleation (removal of the eye globe) of her right eye in 2018.
"As a child, I remember my mother crying when my Melbourne doctor told us about my condition and what might lie ahead," Shelley said.
Soon after the diagnosis, Shelley and her parents met Professor Frank Billson, or 'Prof' as she refers to him, one of the only specialists in Australia with expertise on uveitis.
Prof Billson AO, who is now in his nineties, had a distinguished career in ophthalmology, which began in Melbourne. He was the Director of the Ophthalmology Department for seven years at the Royal Children's Hospital (RCH) before moving to Sydney.
Shelley and her family regularly travelled to the Sydney Eye and Ear Hospital where Prof Billson was working, for treatment.
"My parents and I just fell in love with him because he had such a beautiful bedside manner," Shelley says. "He always asked how I was going at school, if I had good friends, and if I enjoyed sport - he was interested in all elements of my life and family."
Throughout her life, Shelley has needed frequent visits to ophthalmologists, and in her school years she would visit a doctor weekly to manage the inflammation and check for signs of glaucoma.
After leaving school, Shelley completed Arts and Social Work degrees before living in Israel for several years. She returned to Australia when her condition worsened and she needed the support of her parents, who dedicated themselves to her treatment and care.
Back in Melbourne, Shelley married and had three children and underwent numerous procedures, as well as treatment with steroids and medication for her uveitis and related conditions glaucoma, corneal edema, and juvenile rheumatoid arthritis.
In 2018, no more could be done for her right eye. With the guidance of Prof Billson, who she consulted on major treatment decisions, Shelley made the difficult call to have the eye removed.
"The eye wasn't functioning properly, it was almost blind, and I could no longer manage the pain," said Shelley. "Throughout my whole life, whenever there have been complicated decisions to make about my eye, Prof always took the time to research, empathise, be compassionate, and supportive.
"I still wake up in pain every day, but research is key. If we knew now then what we know now, things would have been different for me."
Professor Billson's care and kindness over more than four decades was so significant that Shelley has now established the Professor Frank Billson Research Scholarship. It provides funding for a staff member within the Ophthalmology department at the RCH. Dr Sandra Staffieri AO, who is a Research Fellow at CERA and the Retinoblastoma Care Co-ordinator/Senior Clinical Orthoptist at the hospital, was one of the inaugural recipients.
"Securing research funding is highly competitive and even more so when the disease is rare and the impact of the outcomes of the research will affect so few people," she said. "It was validating to be reassured that even patients with a rare condition were important, and I am so proud to have been able to be part of this work."
CERA Managing Director Professor Keith Martin said Shelley's establishment of the research scholarship was a significant contribution to building knowledge in the field.
"Professor Billson is an extraordinary person who continues to make a different to countless children and their families over many years," he said. "CERA is grateful that our researchers can also benefit from the scholarship."
Shelley is excited about future research into children's eye disease.
"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," she said.
"It was so wonderful to take my husband Adam Joel and my three beautiful children to meet Prof a few years ago to show him that, despite everything, look what I have created.
"This scholarship honours Prof's legacy to medicine forever and will help children for generations to come."
Our researchers are devoted to investigating new treatments for this painful and blinding inflammatory eye condition, as well as advancing our scientific understanding of its causes and prognosis.
Here are a few ways you can help support our world-leading research through fundraising.
