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Living with keratoconus: Highlights from KeraClub 2023

The long-term effectiveness of corneal cross-linking in keratoconus, as well as the mental health toll of the disease, the emergence of surgical interventions, and persistence with contact lenses were the focus of Australia’s KeraClub 2023.

The Save Sight Institute’s eighth annual event for keratoconus patients and their caregivers was held as a webinar on the eve of World Keratoconus Day 9 November 2023 and attracted a global audience, with 144 attendees from five countries.

The event’s success lies in its inclusive demographic representation and high engagement, creating a dynamic platform for sharing knowledge and fostering community bonds. Attendees spanned generations, with a third aged 60 or older. The speaker lineup included a range of experts such as Professor Stephanie Watson, head of the Corneal Unit at Sydney Eye Hospital, Optometry Australia president and Cornea and Contact Lens Society Australia vice president Dr Margaret Lam, as well as people with lived experience of keratoconus, among others.

Treatments for keratoconus among KeraClub 2023 attendees. CXL = Corneal cross-linking, ICRS = Intracorneal ring segment.

Empowering through experience: A personal journey with Michelle Pritchard

Michelle Pritchard.

KeraClub 2023 was co-hosted by Save Sight Institute, Sydney Nano and Keratoconus Australia and chaired by Ms Michelle Pritchard, a renowned violist who has a lived experience of keratoconus.

Diagnosed with keratoconus at age 16, she shared her personal journey that included undergone three corneal transplants and experiencing graft rejection. At one point, she faced legal blindness before regaining her sight.

Pritchard is now a passionate advocate for supporting others dealing with keratoconus and has been involved with the KeraClub since its inception.

During her presentation, she emphasised the challenges of living with keratoconus and highlighted the importance of finding the right support and knowledge to ease the difficulties of living with the disease.

Unlocking insights: Real-world outcomes of CXL

Dr Himal Kandel.

Dr Himal Kandel, the Kornhauser Research Fellow at the Save Sight Institute, The University of Sydney, presented insights into the real-world outcomes of corneal cross-linking (CXL), drawing on the Save Sight Keratoconus Registry (SSKR).

He detailed the standard CXL protocol, known as Dresden, and highlighted the diversity of protocols used in real-world practice. He introduced the SSKR, a patient database, a resource for tracking patients’ natural history1 and treatment outcomes, showcasing its utility through visual graphs that aid clinicians in monitoring keratoconus.

Kandel emphasised the importance of the SSKR research, pointing out limitations in existing research, such as small sample sizes and limited follow-up durations. He also shared results from the registry, including findings on the long-term effectiveness of CXL,2,3 improvements in quality-of-life,4-6 and insights into adverse events.

He discussed studies comparing different CXL protocols,3,8,9 such as varying UV durations, highlighting safety and effectiveness, and concluded by expressing the ongoing value of the registry.

Navigating life with keratoconus: A Personal Journey with A/Prof Gregory Harper

A/Prof Gregory Harper.

Associate Professor Gregory Harper, a scientist with the University of Melbourne and Vice President of Keratoconus Australia, also shared his personal journey with keratoconus.

His diagnosis in 1975 led to a career shift, but he emphasised that it was influential rather than a barrier to his success.

However, Harper acknowledged the strains on mental health that can arise from poor eyesight and the frustrations associated with keratoconus. He recounted various experiences, such as misinterpreting book titles due to poor vision and the challenges of social interactions.

Despite the challenges, he highlighted the technological and medical advancements that have positively impacted his life. He mentioned the progress in contact lens materials, the development of soft lenses, touch screens allowing font adjustments, and the groundbreaking corneal cross-linking procedure.

Towards the end of his presentation, Harper introduced the Mental Well-Being and Vision Loss Resources Guide developed by Vision 2020 Australia. He discussed the importance of mental health support, especially for young adults and teens with keratoconus, and how the guide aims to address this need.

Breaking barriers: Dr Margaret Lam

Dr Margaret Lam.

During her talk, Lam – also head optometrist at 1001 Optical Bondi – addressed keratoconus prevalence in Australia, highlighting recent studies that show a higher incidence than previously thought, especially among 20-year-olds.

She outlined the challenges in early detection due to limitations in equipment, practitioner awareness, and late diagnoses, which can profoundly affect patients’ quality-of-life.

Discussing the role of contact lenses in keratoconus, Lam referred to the Collaborative Longitudinal Evaluation of Keratoconus (CLEK) Study,10 which found that a significant percentage of patients could achieve good comfort and vision with contact lenses.

She also categorised contact lenses into families based on the severity of keratoconus, ranging from mild to advanced, and stressed the need for personalised advice from optometrists with expertise in contact lenses to ensure the right fit for each patient. The cost barriers associated with these specialised lenses were also discussed.

To conclude, Lam encouraged people with keratoconus to explore contact lenses, even if previous attempts were unsuccessful, due to advancements in technology.

A call to action for keratoconus community Support and advocacy

Larry Kornhauser.

Mr Larry Kornhauser OAM, considered a key figure in the Keratoconus community in Australia, presented an insightful talk. Diagnosed with keratoconus at age 12 and having undergone a corneal transplant at 18, he shared his journey and highlighted the challenges faced by keratoconus patients.

As the founding president of Keratoconus Australia, he discussed the organisation’s evolution over 24 years, outlining its role in providing information, facilitating peer connections, advocating for patients, and supporting research.

While acknowledging the positive impact of treatment advancements, he also pointed out “a concerning rise” in the prevalence of the disease, necessitating continued support for patients.

As such, he has called for the survival of self-help groups like Keratoconus Australia, urging the community to consider the organisation’s future and the need for new advocates, especially younger individuals, to address evolving challenges such as affordability of treatments, early diagnosis, mental health support, and improved messaging about factors affecting keratoconus.

He appealed to the audience for their expertise, commitment, creativity, and management skills to ensure the ongoing success of Keratoconus Australia, and underscored the importance of collective efforts in maintaining the organidation’s independence and making a lasting impact on the Australian keratoconus community.

Pioneering nanobiomedical engineering insights

Dr Gurvinder Singh.

Dr Gurvinder Singh, a lecturer in the School of Biomedical Engineering at The University of Sydney, presented groundbreaking research on the application of biomedical engineering in treating keratoconus.

With expertise in materials engineering, biomedical engineering, and nanotechnology, he has authored numerous peer-reviewed articles and holds a patent for sustainable nanomaterials manufacturing technology.

In his talk, Singh discussed the evolving field of nanobiomedical engineering and its potential impact for keratoconus such as 3D-printed scaffolds, contact lenses, and medical implants. Additionally, nanotechnology has potential in drug delivery, particularly in developing treatments for keratoconus.

The presentation focused on a collaborative effort with Prof Watson, who had successfully developed contact lenses to deliver limbus stem cells for keratoconus. Singh’s contribution involved the use of nanoparticle technology to encapsulate proteins, allowing for a controlled and sustained release, and enhancing the regenerative capabilities of limbus stem cells.

Navigating the horizons of keratoconus

Prof Stephanie Watson.

Watson, who is also Head of the Corneal Research Group at Save Sight Institute, and Deputy Director of Industry, Innovation and Commercialisation at Sydney Nano, provided a comprehensive overview of keratoconus and its current and future management strategies.

Some of the highlights from her talk included:

  • Keratoconus is a condition that varies in prevalence across the globe, affecting patients worldwide. In 2023, research indicates a significant impact on the quality-of-life5,6 for individuals with keratoconus, with associated effects on mental health.11
  • Cross-linking treatment has been shown to improve outcomes for keratoconus patients,2-4,8,9 with about 80% experiencing visual improvement. However, the primary goal of cross-linking is to halt the progression of the condition. Patients under 21 years old, especially those with steep corneas, need frequent follow-ups to monitor progression.1,12
  • Vision correction for keratoconus patients often involves spectacles and contact lenses. Achieving a good fit with contact lenses can be challenging, but persistence is key.
  • Corneal grafting, once performed in about 20% of keratoconus cases, is now less common due to advancements like cross-linking and improved contact lens fittings.
  • Emerging treatments for keratoconus include various surgical procedures, such as corneal ring implants – with artificial rings or corneal tissue and laser treatments with or without cross-linking and pinhole intraocular lenses. The evidence for these treatments is emerging, emphasising the need for ongoing research and data collection.
  • The Save Sight Keratoconus Registry has contributed valuable evidence on the efficacy and safety of cross-linking treatments. Long-term data (up to five to 10 years) indicates improved vision, stabilisation of corneal shape and thickness, and overall positive impacts on quality of life.2-4,13
  • Beyond 2023, future goals include earlier diagnosis of keratoconus, prevention strategies, affordable and accessible treatments, and ongoing research to improve patient outcomes. Quality research is essential for advancing keratoconus management.

Philanthropy’s impact: Keratoconus Research

Ms Rachel Love, a fundraising professional at The University of Sydney, shed light on the significant role philanthropy plays in advancing keratoconus research.

Her talk, which focused on the funding landscape in Australia, highlighted the challenges researchers face in securing resources. She revealed that government agencies, such as the National Health and Medical Research Council (NHMRC), provide crucial support, but they are constrained by limitations – it can only fund less than 10% of grant applications, forcing many talented researchers to leave the sector.

The funding challenges extend to the high cost of research, especially for cutting-edge projects like clinical trials and genetic studies. Love stressed the importance of public awareness, public advocacy, and education in garnering support for research funding, and expressed the need for a cooperative effort from government, private sector, and nonprofit organisations to address these challenges effectively.

In her session, Love advocated for the indispensable role of philanthropy in filling the funding gap for keratoconus research. Donor support, according to her, allows researchers to prioritise keratoconus research, attract and retain top minds, and shape research agendas based on immediate needs rather than available funding. Philanthropic funding, she noted, facilitates long-term research projects, ensuring consistent progress without the interruptions caused by funding shortages.

Panel discussion

A panel of experts addressed various concerns related to keratoconus, providing valuable insights and strategies for patients. The session, moderated by Watson, covered a range of topics.

The discussion began with a poll, engaging the audience and setting the stage for a dynamic conversation (refer to Figure 4). Topics ranged from the affordability of suitable contact lenses for advanced keratoconus patients to advancements in nano-bioengineering. Lam responded to a question about pensioners with keratoconus struggling to afford lenses, emphasising the importance of communication with practitioners and exploring compassionate discounts.

The discussion began with a poll, asking attendees how concerned they were with the cost of contact lenses.

Nano-bioengineering emerged as a point of interest. Challenges such as bio-compatibility and long-term effects were acknowledged, highlighting the need for careful consideration in its application. The panel discussion delved into the possibility of repeated cross-linking procedures and their success rates.

The panel also addressed issues related to driving at night for keratoconus patients, suggesting troubleshooting measures and stressing the importance of regular consultations with eyecare professionals.

The panellists also shared information about emerging technologies, including eye drops and their applications, while underlining the importance of ongoing trials and evidence-based approaches.

Recordings available: The KeraClub 203 recordings are available here

More reading

KeraClub attracts majority middle-aged keratoconus patients

CAIRS Plan tool to streamline keratoconus surgical procedures

CPD: The role of the optometrist in keratoconus


  1. Ferdi A, Nguyen V, Kandel H, et al. Predictors of progression in untreated keratoconus: a Save Sight Keratoconus Registry study. Br J Ophthalmol. 2022;106(9):1206-1211.
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