The KeraClub links patients, researchers and clinicians on the topic of keratoconus.
KeraClub, a community event for patients with keratoconus and their friends and family was co-hosted by Save Sight Institute, The University of Sydney and Keratoconus Australia at the Sydney Eye Hospital on 24th October 2019. This annual event brought together over 40 patients with keratoconus, clinicians and researchers.
The event was chaired by Ms Michelle Urquhart, an internationally lauded violinist who has keratoconus. The speakers included Professor Stephanie Watson, Dr Jim Kokkinakis, and patients with keratoconus, Ms Joy Alleyne and Ms Ana Sandoval.
Ms Michelle Urquhart speaking at the KeraClub 2019
Ms Joy Alleyne kicked off the evening with a rendering of her personal experience with keratoconus. She recounted her shock when she was diagnosed in her youth, and the difficult, yet worthwhile adjustment to living with contact lenses. She wore piggyback lenses (hard contact lenses over soft contact lenses), which proved “hard at the beginning but the vision with contact lenses is so good, there is no other way to compare it. With contact lenses, you have hand-eye coordination, peripheral vision, and depth perception.” Additionally, she found wearing the lenses prevented her from rubbing her eyes. However, alongside their merits, the lenses came with a share of inconveniences: they were easy to lose, burdensome to clean, and finding an optometrist with experience in keratoconus management was a challenge. After sharing a wealth of experience with keratoconus and contact lenses, she advised, “Don’t let keratoconus define you, you decide what you are going to be. There are times when things are difficult. I once hailed a truck instead of a bus by accident! You just have to do what you can to get around”
Joy’s talk was followed by a presentation from Professor Stephanie Watson, the head of the Corneal Research group at the Save Sight Institute, a corneal surgeon and an innovator. Prof Watson detailed recent research, clinical care and current teaching activities conducted by her team at Save Sight Institute, an institute of The University of Sydney.
She acknowledged the contribution of Keratoconus Australia and its president Mr Larry Kornhauser as “a great source of support for keratoconus research and the KeraClub event since it started.”
Professor Stephanie Watson speaking at the KeraClub 2019
In presenting her research on keratoconus, Prof Watson showcased a recent finding from her team. They found that younger people and those with more advanced keratoconus have the greatest risk of changes in the steepest part of their cornea. Dr Alex Ferdi, a PhD student in Prof Watson’s research group, pointed to the importance of this work in helping clinicians decide who requires corneal cross-linking.
Prof Watson also reported on the progress the Save Sight Keratoconus Registry. This registry tracks outcomes of keratoconus using the real-world clinical data in over 2,600 patients. With sites in Australia, New Zealand and Europe, there is now data from over 23,000 patient visits. Clinicians receive benchmarking reports comparing the condition of their patients with other users of the registry. The registry system generates graphs ‘on the fly,’ which help monitor visual acuity, corneal shape and keratoconus treatments. Patients, too, benefit from the registry, as the graphs aptly illustrate their individual keratoconus journey.
Patient-reported outcomes are collected using the ‘Keratoconus Outcomes Research Questionnaire’ developed by Professor Konrad Pesudovs. Dr Himal Kandel’s project found that this is a valid tool to measure the quality-of-life impact in keratoconus and the benefits of keratoconus treatment methods.
Prof Watson was pleased to announce the launch of the new “Optometry module” for the Save Sight Keratoconus Registry. This module developed with Dr Laura Downie, School of Optometry, The University of Melbourne, will track the continuity of care from ophthalmologists and optometrists for keratoconus patients, including contact lenses.
“Improving outcomes of people with keratoconus can’t be done alone,” said Prof Watson. “Collaborations within Australia and abroad for basic science, clinical and translational research and collaborations with registry users and stakeholders including patients with keratoconus and Keratoconus Australia, are all needed to deliver research that matters.”
The insightful talk from Prof Watson was followed by an informative presentation from Dr Jim Kokkinakis. Dr Kokkinakis has over 30 years of experience of managing keratoconus patients with various types of contact lenses. He is an optometrist at The Eye Practice, Sydney, and an adjunct senior lecturer at the School of Optometry and Vision Science at the University of New South Wales. “Managing contact lens in ‘extreme’ conditions’” was a key topic on this year’s event.
Dr Jim Kokkinakis speaking at the KeraClub 2019
Dr Kokkinakis highlighted that every keratoconus patient is unique: they have their own clinical profile, challenges, and expectations. He discussed common misconceptions, providing reassurance that people with keratoconus could do most things in contact lenses… aside from climbing Mt Everest! In addition to the broad range of capabilities, however, he underscored the risks of swimming or showering in contact lenses, rinsing contact lenses in tap water and sleeping in contact lenses.
Ms Michelle Urquhart shared her experience with scleral lenses. After undergoing corneal graft surgery, she now wears scleral lenses very comfortably.
“It’s brightened up my life. I’m driving at night-time again; touring; playing music, reading all those tiny little dots on the page. I now feel I am a very fortunate person.” – Michelle Urquhart
The final speaker, Ms Ana Sandoval, flew from Melbourne to Sydney for the event to share her experiences and meet other people who have lived with keratoconus over different phases of their lives. She stressed the emotional toll of living with keratoconus, stating, “I knew absolutely no one with keratoconus… and it felt so lonely… When I wore my first contact lenses, I felt I was missing out on so much… the leaves, flowers and every little detail.”
Ana recently underwent cross-linking in both eyes. She affirmed that despite the pain and discomfort during the treatment, stabilising her keratoconus was worthwhile.
The talks were followed by a panel discussion where participants actively engaged in discussions. The questions related to keratoconus risk factors, seeking appropriate services and managing keratoconus.
For the first time, the KeraClub was broadcast live this year making it accessible to the people who couldn’t physically attend the event. The approach allowed us to have participants from Australia and abroad. Please visit our SoundCloud page to find this year’s recordings.
Participants found the event advantageous, as it provided a forum to ‘interact with people with up-to-date information on the latest advancements in keratoconus treatments and research developments.”
Dr Himal Kandel, the Kornhauser Research Associate working at the Save Sight Keratoconus Registry, announced KeraClub as an established annual event, with next year’s session being held early in 2020.
Dr Himal Kandel and Dr Alex Ferdi provided support for the educational segment of the meeting. Save Sight Institute staff, Janet Bunn and Becky Lim were of invaluable help during the informal social gathering.
Next year, KeraClub will be in its 5th Year. To ensure you don’t miss out, click here to sign up for our newsletter now!