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KeraClub Unveiling Insights in Keratoconus Management

KeraClub, an annual community event dedicated to patients with keratoconus and their caregivers, h

Figure 1. KeraClub participant responses to ‘When were you diagnosed with keratoconus?’.

as become a dynamic platform for sharing knowledge and fostering community bonds.

Dr Himal Kandel and Professor Stephanie Watson, two of the speakers in the most recent online event, share this report.

KeraClub’s triumph lies in its inclusive demographic representation and vibrant engagement. Hosted by Save Sight Institute, Sydney Nano, and Keratoconus Australia on the eve of World Keratoconus Day, on 9 November last year, the event attracted an audience of 265 people from nine countries. Of those, 144 attendees from five countries participated in the live webinar.

More than 80% of the registered participants had a confirmed diagnosis of keratoconus, while the remainder included their dedicated caregivers or healthcare professionals. Notably, more than half of those with keratoconus reported a prolonged journey of over two decades with the condition (Figure 1). Attendees spanned generations, with a third aged 60 or older, and were from ethnically diverse backgrounds.

Various treatment modalities were embraced by the majority, including glasses, contact lenses, corneal cross-linking (CXL), intracorneal ring segments (ICRS), and keratoplasty (Figure 2).


Keratoconus is a condition that varies in prevalence across the globe. In 2023, research indicates a significant impact on the quality of life1,2 for individuals with keratoconus, with associated effects on mental health.3

CXL has been shown to improve outcomes for keratoconus patients,4-8 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.9,10

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 crosslinking and improved contact lens fittings. Professor Stephanie Watson, who provided these current insights, also told the audience that 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 (SSKR) provides valuable data for addressing practical questions in keratoconus management. The SSKR is a patient database and resource for tracking patients’ natural history9 and treatment outcomes.

The utility of the registry was showcased through visual graphs that aid clinicians in monitoring keratoconus.

Results from the registry include findings on the long-term effectiveness of CXL,4,5 improvements in quality of life,1,2,6 and insights into adverse events.11

In sharing these results, Dr Himal Kandel discussed studies comparing different CXL protocols,5,7,8 such as varying UV durations, highlighting safety and effectiveness. He concluded by expressing the ongoing value of the registry in advancing the understanding and treatment of keratoconus.


Dr Margaret Lam, Optometry Australia President and Vice President of the Cornea and Contact Lens Society Australia, emphasised the challenges in detecting keratoconus early due to limitations in equipment, practitioner awareness, and late diagnoses, which can profoundly affect patients’ quality of life.

Dr Lam referred to the Collaborative Longitudinal Evaluation of Keratoconus (CLEK) Study,12 which found that a significant percentage of patients could achieve good comfort and vision with contact lenses. She emphasised the importance of early intervention and the advancements in contact lens designs that offer improved comfort.

Dr Lam encouraged participants to explore contact lenses as a treatment option, even if previous attempts were unsuccessful, due to advancements in technology.

Looking to the future, Dr Gurvinder Singh, a lecturer in the School of Biomedical Engineering at The University of Sydney, presented ground-breaking research on the application of nano-biomedical engineering in treating keratoconus.

He highlighted the use of nanomaterials in various applications, such as 3D-printed scaffolds, contact lenses, and medical implants. Additionally, he emphasised the significance of nanotechnology in drug delivery, particularly in developing treatments for keratoconus.

The presentation focussed on a collaborative effort with Prof Watson, who has successfully developed contact lenses to deliver limbus stem cells for treating keratoconus. Dr 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.


Throughout the event, speakers shared personal stories of life with keratoconus. One was that of internationally renowned violist and violinist, Michelle Pritchard, who was diagnosed with keratoconus at age 16. Having undergone three corneal transplants and experiencing graft rejection, she faced legal blindness before regaining her sight.

Now a passionate advocate for supporting others living with keratoconus, she highlighted the importance of finding the right support and knowledge. She said KeraClub had been a valuable support group offering peer support, shared life experiences, and the latest research findings from medical professionals.

Also navigating life with keratoconus, Associate Professor Gregory Harper, a scientist with the University of Melbourne and Vice President of Keratoconus Australia, acknowledged the strains on mental health that can arise from poor eyesight and the frustrations associated with keratoconus. His diagnosis in 1975 led to a career shift, but he emphasised that it was influential rather than a severe blocker to his success.

Assoc Prof Harper highlighted the technological and medical advancements – such as the progress in contact lens materials, the development of soft lenses, touch screens allowing font adjustments, and the ground-breaking CXL procedure – that have positively impacted his life.

He introduced the Mental Wellbeing and Vision Loss Resources Guide, developed by Vision 2020 Australia, and emphasised the importance of mental health support, especially for young adults and teens with keratoconus, and how the guide aims to address this need.


Founding President of Keratoconus Australia, Larry Kornhauser OAM emphasised the importance of peer support and self-help in managing keratoconus. A poll conducted among KeraClub attendees revealed most wanted to talk to someone with keratoconus about their lived experience (Figure 3).

Keratoconus Australia has a crucial role in providing information, facilitating peer connections, advocating for patients, and supporting research. Mr Kornhauser acknowledged the positive impact of advancements in keratoconus management, however, he also pointed out a concerning rise in the prevalence of the disease, necessitating continued support for patients.

Mr Kornhauser passionately called for the survival of groups like Keratoconus Australia, emphasising 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.


Rachel Love, a fundraising professional at The University of Sydney, shed light on the significant role philanthropy plays in advancing keratoconus research. Her talk stressed the importance of public awareness, public advocacy, and education in garnering support for research funding. She expressed the need for a cooperative effort from government, private sector, and non-profit organisations to address these challenges effectively.

Ms Love passionately advocated for the indispensable role of philanthropy; donor support allows researchers to prioritise keratoconus research, attract and retain top minds, and shape research agendas based on immediate needs rather than available funding.


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

Nano-bioengineering emerged as a point of interest, with the panellists discussing its potential as a treatment option. Challenges such as biocompatibility 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. It also addressed issues related to driving at night for keratoconus patients, suggesting troubleshooting measures, and stressing the importance of regular consultations with eye care professionals.

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

Overall, feedback for the KeraClub event was overwhelmingly positive, with participants expressing appreciation for the diversity of views and the range of topics covered.

KeraClub recordings are available at youtu.be/x5DD9CtrNQE?si=1WjOvM3ey-GoJ3O9.

Dr Himal Kandel PhD (HlthSc) is the Kornhauser Research Fellow at the Save Sight Institute, The University of Sydney.

Professor Stephanie L. Watson OAM BSc(Med) (Hons I) MBBS (Hons I) PhD FRANZCO is Head of the Corneal Unit at Sydney Eye Hospital, Head of the Corneal Research Group at Save Sight Institute, and Deputy Director of Industry, Innovation and Commercialisation at Sydney Nano.


  1. Kandel, H., Nguyen, V., Piermarocchi, S., et al., Quality of life impact of eye diseases: A Save Sight Registries study. Clin Exp Ophthalmol. 2022;50(4):386–397.
  2. Kandel, H., Pesudovs, K., Nguyen, V., et al., Patient-reported outcomes in keratoconus: A Save Sight Keratoconus Registry study. Cornea. 2023;42(5):590–597.
  3. Durakovic, E., Kandel, H., Watson, S.L., Mental health impact of keratoconus: A systematic review. Cornea. 2023;42(9):1187–1197.
  4. Ferdi, A.C., Kandel, H., Nguyen, V., et al., Five‐year corneal cross‐linking outcomes: A Save Sight Keratoconus Registry study. Clin Exp Ophthalmol. 2023;51(1):9–18.
  5. Kandel, H., Abbondanza, M., Gupta, A., et al., Comparison of standard versus accelerated corneal collagen cross-linking for keratoconus: 5-year outcomes from the Save Sight Keratoconus Registry. Eye. 2023:DOI: 10.1038/s41433-41023-02641-41436.
  6. Kandel, H., Chen, J.Y., Watson, S., et al., Cross-linking improves the quality of life of people with keratoconus: A cross-sectional and longitudinal study from the Save Sight Keratoconus registry. Cornea. 2023;42(11):1377–1383.
  7. Kandel, H., Nguyen, V., Ferdi, A., et al., Comparative efficacy and safety of standard versus accelerated corneal crosslinking for keratoconus: 1-year outcomes from the Save Sight Keratoconus Registry study. Cornea. 2021;40:1581–1589.
  8. Benito-Pascual, B., Kandel, H., Watson, S., et al., Efficacy and safety of standard corneal crossKand-linking procedures performed with short vs standard riboflavin induction: A Save Sight Keratoconus Registry study. Cornea. 2023;42(3):326–331.
  9. 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.
  10. Ferdi, A.C., Nguyen, V., Watson, S.L., Keratoconus natural progression: a systematic review and meta-analysis of 11 529 eyes. Ophthalmology. 2019;126(7):935–945.
  11. Watson, S., Kandel, H., Ferdi, A., et al., Who is getting clinically significant haze after corneal cross-linking for keratoconus? A Save Sight Keratoconus Registry study. Invest Ophthalmol Vis Sci. 2020;61(7):4067.
  12. Zadnik, K., Barr, J.T., Edrington, T.B., et al., Baseline findings in the Collaborative Longitudinal Evaluation of Keratoconus (CLEK) Study. Invest Ophthalmol Vis Sci. 1998;39(13):2537–2546.