The inaugural meeting of the Keratoconus club was held on Thursday 6 October by the Save Sight Institute. Keratoconic patients, family, friends and eye care professionals heard guest speakers Michelle Urquhart, Larry Kornhauser (Keratoconus Australia), Margaret Lam and Prof Stephanie Watson share their expertise and experience of keratoconus.
Patients, Michelle and Larry, shared their experiences living with keratoconus and the importance of seeking help from other patients and support organisations. Margaret Lam, NSW President of the Cornea and Contact Lens Society of Australia presented on optometrists who specialize in managing keratoconus patients with contact lenses and current management techniques for patients. Professor Stephanie Watson, an eye surgeon with specialization in Cornea updated attendees on the latest developments with Corneal Cross Linking and the specialist management of patients with keratoconus.
Professor Watson the role of The Save Sight Registries Keratoconus audit, a sophisticated internet-based registry empowering doctors with timely access to data, and patients to be actively involved in their treatment journey. With support from the Ophthalmic Research Institute of Australia, Keratoconus Australia and the Save Sight Institute, the registry is collecting data that will inform treatment guidelines improving patient outcomes. Ophthalmologists using the registry are able to review their own patient outcomes and obtain statistical reports on their own practice thus leading to the delivery improved patient care.
The aim of the ‘Keratoconus Club’ is to form a community of professionals, patients, friends and family, committed to sharing information and providing support avenues for those living with keratoconus. One patient noted that “until today I had met only one person with KC [keratoconus]” highlighting the, at times, isolating nature of eye disease. With the success of the first meeting, the ‘Keratoconus Club’ will continue to grow and showcase the commitment of individuals and eye care professionals in driving the best clinical practice and support for keratoconic patients.
Patients, practitioners, family and friends wishing to be involved in the Keratoconus Club or Save Sight Registry can contact SSI.SSR@sydney.edu.au for further details