Strategies for Coping with KC

Keratoconus (KC) doesn’t just affect your vision – it can also impact your daily life and emotional well-being. Distorted eyesight from KC can interfere with tasks like reading, driving, or recognizing faces, often leading to frustration or anxiety. That’s why coping with keratoconus is about more than just treating the eyes; it’s about preserving your quality of life. The good news is that with the right strategies and support, many people with keratoconus continue to live full, meaningful lives. Below are five key coping strategies, each aimed at helping you protect your vision and your day-to-day quality of life. 

Read the full article on the NKCF Website

New Research Study

Investigator Initiated, Prospective Study of Xenia Corneal Lenticule

This information is provided directly by researchers and we recognise that it isn’t always easy to understand. We are working with researchers to improve the accessibility of this information.

Cornea ectatic conditions such as keratoconus and post-LASIK (Laser In situ Keratomileusis) ectasia are disorders of the eye that are notorious for its uncontrolled progression over time, leading to loss of vision. There are valuable treatment options for controlling disease progression in mild to moderate stages of such disease. However in advanced cases and / or when contact lenses cannot be worn, surgery remains the only treatment option to rehabilitate vision. Most treatment options are highly invasive and represent significant risks. This study evaluates a novel corneal implant, Gebauer™ Lenticule to treat severe keratoconus or post-LASIK ectasia. This implant is derived from porcine collagen and intended for intra-stromal insertion. The Gebauer™ Lenticule is expected to improve the stability of the cornea while not impairing the vision. The procedure is an additive procedure after other treatment options have been exhausted. The procedure is reversible with removal of the implant (in the unexpected case of an adverse reaction), and vision may be restored to baseline.

The purpose of this study is to evaluate how well the implant is tolerated, it’s safety profile, and how effective this new treatment option is in the treatment of keratoconus or post-LASIK ectasia.

Visit the website for more details – here


In Memoriam Mike Oliver

It is with great sadness that we announce the death of Mike Oliver, co-founder of the Keratoconus Group, long time trustee and ex Chair of the trustees. Mike’s contribution to the creation and development of the KC Group was immense. His ideas and ambition for what it could become were an inspiration to the rest of us. It was thanks to him that what started as some meetings of KC patients in Moorfields became a national charity. It was Mike who persuaded us that, in addition to our programme of meetings for members, we should also hold a one day conference, inviting a variety of speakers. The first successful conference in London in 2001 led to (so far) nine more in London, Birmingham, Glasgow and Manchester. It was Mike who had the idea of fundraising walks for the charity with members joining as and when they could along the way. The first of these was walking the length of the Thames Path from the source to London. Mike planned the route for each day and walked the entire route (the only one of us who managed to walk every day of the fortnight)! A couple of years later he organised the equally successful Capital Ring walk. He gave generously of his time to the charity and worked tirelessly to spread awareness of keratoconus and its effects on physical and mental wellbeing. That included the last two years when he was already ill but, despite that, gave a very moving talk at our 2022 conference, you can view it – here. Perhaps it was his legal background that made him such an eloquent speaker and a great problem solver. But, of course, apart from all his achievements, we’ll remember Mike above all for his warmth and kindness, his ability to listen and empathise, his dedication to others. We will miss him hugely.

If any of his KC friends would like to attend his funeral, please contact anne@keratoconus-group.org.uk for details. 

Research update

In an earlier post, we outlined how University of Liverpool biomedical engineer, Dr. Ahmed Abass, had been awarded funding from Fight for Sight and Keratoconus Group UK to develop a new type of spectacle lens that can correct irregular astigmatism for keratoconus patients.

Dr. Abass has now completed the trial and plans to publish his paper later this year and has agreed to present his findings at one of our meetings. In the meantime, he has supplied us with a simplified summary. We appreciate the work Dr. Abass is doing to lessen our dependency on contact lenses. Here is the latest summary:

Although patients with keratoconus can achieve improved visual acuity with contact lenses, it is not yet commercially possible to do so with spectacles. Visual acuity using spectacles is affected by non-orthogonal (irregular) astigmatism and High Order Aberrations, causing visual effects such as doubling and ghosting images, poor contrast and increased glare. Historically, spectacles have not been able to correct these issues. This new study investigated whether correction of non-orthogonal astigmatism could improve the visual experience of keratoconic patients. There was reason to believe this could be the case, based on a previous small study: Effect of Correcting Non-Orthogonal Astigmatism in Corneas with Novel Optical System.

This is the first study of its kind to see if correcting non-orthogonal astigmatism might reduce the visual disturbances experienced by people with keratoconus, and the results are very encouraging. It was found that 70% of eyes tested with the novel test lenses showed an improvement in visual acuity with reduced ghosting and an improvement in letter clarity. 

Analysis of the results is ongoing to investigate why some subjects responded better than others, as many factors are involved. Early indications are that the cone position and the effect of high-order aberrations had a greater effect in some subjects.

This small study was designed to see if the idea had merit, and the results have been very positive. Further work now needs to be done to find ways of manufacturing such lenses and studies carried out on larger numbers of subjects.

Corneal Research in Wales

The Medical Research Council (MRC) has awarded Cardiff University’s School of Optometry and Vision Sciences a grant valued at £2.4 million for a large scale study on the cornea.
The aim of the research is to develop new technologies and techniques to better understand the function of the cornea and other collagen rich tissues. The research will also look to develop novel therapeutic strategies for the treatment of connective tissue disorders including developmental abnormalities, disease and abnormal healing processes. The team will also continue to run, on behalf of the ophthalmological community, the UK Cross-linking Consortium to drive towards the best possible treatment for keratoconus.Cardiff University has been been awarded a £2.4m grant from the Medical Research Council to continue with their corneal research programme for a further 5-years.   Read more …

New study to help with shortage of eye donors

Eye image

Researchers at the University of Southampton and clinical partners across England are leading a new project aimed at helping to tackle a shortfall in the number of people willing to consent to eye donation.

In partnership with NHS Blood and Transplant (NHSBT) service – with £720,000 funding from the National Institute for Health Research (NIHR), researchers at the University will investigate the viability of approaching patients in specialist palliative care settings or hospices, who may be willing to donate their eyes after they die.

Eye tissue is needed to treat a variety of eye conditions and to aid research into new sight saving therapies. However, currently there is a lack of eye tissue available to combat eye diseases which can lead to sight loss. NHS Blood and Transplant eye banks are around 20 percent below the level needed to supply hospitals. In April 2019 there were 279 corneas available, with a store of 350 needed at any one time to satisfy demand for the treatment of patients.

Lead researcher, Dr Tracy Long-Sutehall comments: “Understandably, people can hold very strong feelings about donating their eyes or those of a loved one – from concerns about disfigurement to cultural or religious considerations.

Continue reading “New study to help with shortage of eye donors”

Cornea Donation Shortfall Highlighted

Fight for Sight is working to raise awareness of the importance of eye donations after research has found that eyes are the organ that people would be the least likely to donate following their death.
The eye research charity has highlighted that there is currently a shortfall in corneas that can be used for transplant, with statistics released by NHS Blood and Transplant this month reporting that there are currently 279 corneas in eye banks, despite the target being to have around 350 at all times.

Continue Reading on Optometry Today website