Blog Posts

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. 

Support Mario Saldanha

We are hugely grateful to Mario Saldanha, corneal consultant at Singleton Hospital in Swansea. With his medical student daughter Dea, he will be doing the Cardiff 10K Run on Saturday 3rd September in aid of the Keratoconus Group and to raise awareness of keratoconus and its treatment in Wales. Readers of past KC Group newsletters will know that, until recently, Wales did not fund corneal crosslinking (CXL). Mario was at the forefront of the battle to challenge this. But while the policy has now changed, lack of resources and investment in treatment means that young children and teens with Keratoconus are not receiving Cross-linking treatment on time (for young people, CXL must be offered before the vision has been significantly affected by KC and before it affects their education).

So please support Mario and his daughter and donate to his JustGiving page by clicking – here

JustGiving sends your donation straight to Keratoconus Group and automatically reclaims Gift Aid if you are a UK taxpayer, so your donation is worth even more. Please spread the word about this important cause.

Redesigning contact lenses for keratoconus

At our AGM we were treated to a talk by Emma McVeigh about a new project led by Dan Ehrlich (retired Head of Optometry at Moorfields). Moorfields is funding an innovation grant harnessing advanced imaging technology and clinical data to improve the fitting of contact lenses for patients with keratoconus.

You can read the full update published on Moorfields website – here

DVLA publishes revised list of notifiable conditions list for drivers following AOP advice

As you can see from the Government website (Eye conditions and driving), Keratoconus has been removed from the list of notifiable conditons.

This change was made after consultation with the Association of Optometrists. You can read their announcement – Here

However, it remains sensible for drivers with KC to let their insurance company know they have keratoconus or risk a legitimate claim being disallowed.

For further background, this issue was featured on page 10 of our Spring 2023 Newsletter.

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.

Contact lens tolerance

Recently a number of our members have experienced problems when supplied with new scleral contact lenses. Such was the concern that we asked members for feedback in our Spring 2022 Newsletter.

We recently hosted one of our occasional KC Coffee mornings and were fortunately joined by one of the leading optometrists in the Moorfields Contact Lens Department namely, Aneel Suri. He informed us of a new coating that can be bonded to some (but not all) hard contact lens materials. Its availability is increasing and hopefully by the year end it will be available for the majority of RGP and scleral lens materials in use in the UK.

The coating is called “Hydra-peg” and was developed by a company called Tangible Science. You may want to draw your optician’s attention to it if you are experiencing problems with lens wettability which can cause poor vision and comfort primarily in scleral lenses. It will not address any discomfort caused by ill-fitting lenses. You can read about it – here

Update – 14th April 2025

In response to a question from one of our members, we received the following answer from Martin Conway of Contamac:

As to Hydrapeg, this coating has been widely accepted by the scleral lens laboratory network, across the US and Europe.

In answer to the question  “ Can lenses be re-coated?” – well in fact it is possible to strip and recoat a lens but the risk of a contaminated lens coming contact with new lenses being prepared in the laboratory make it impractical.

Labs conform to extremely tight protocols which govern how lenses and raw materials are controlled within the laboratory environment and to introduce a worn lens into that system would breach those regulations. The coating is applied in a bath which will is normally used to treat multiple lenses at a time leading to a possible contamination risk and to have separate rooms or protocol to treat or modify individual lenses is not financially viable, it would be cheaper to make a new pair of lenses! Laboratories used to offer repolishing or even power modification for GP lens wearers – they do not allow that these days for similar reasons. Worn lenses coming into a laboratory present an unacceptable contamination risk. 

The Hydrapeg coating is just 35 nanometres thick and formed from a hydrophilic molecule. If it is allowed to dry out, or is mishandled in any way, then the coating will be disrupted. 

Tangible Sciences have a product called Boost, which is available in the US and is designed to repair the coating and replenish the coating with regular soaking however because of the current regulatory framework in Europe, it is not available here.

I’m sorry I can’t be of more help for your member but despite the fragility of the coating, most patients who have had the coated lenses request them again when it is time for renewal.

Help others benefit from your experience. There are two major difficulties with Keratoconus:

a) No one has heard of it or can even pronounce the name

b) You never meet anyone with the condition.

That is why ‘Member Stories’ are so important. We all have different needs and find a variety of coping strategies. Stories can be a useful way of getting the message across to friends, family members, teachers, and employers. It may be something as simple as sitting with your back to a window. How can a teacher understand that a light adjacent to a blackboard can completely obliterate what is written on it? Or the worst, why don’t you wear a pair of glasses?

A simple story or illustration may be all that is needed to completely change someone’s perspective. How can another person appreciate that you could drive home quite legally after a day’s work, take your contact lenses out and become technically blind and incapable of crossing a road safely?

If you have a Keratoconus story to tell, I would love to hear from you.

Cornea Donation

At our November Coffee Morning, we were treated to a very thought-provoking talk from Tracy Long-Sutehall. Tracy has been very concerned by the shortage of available corneas for transplant surgery. She realised a major opportunity is being missed in hospice care due to the lack of consultation with family members.

The talk was recorded and we intend to add the video to this post as soon as it is available.

Unlike other hospital environments, patients in hospices are usually unsuitable candidates for organ donation. However, with corneas, it is a different story. In many cases, the cornea could be used to benefit someone facing the prospect of losing their sight.

Tracy has undertaken a research project to see how this situation could be rectified.

If you want to know more, you can follow the links below:

Summary of the Research
Details of the Research Project
Tracy’s Biography

Other Links:

Cornea donation myths dispelled

A personal testament from one of our members, the late Andrew MacLean

One of our members is an Ambassador for NHS Blood and Transplant and has made this video for them about his recent cornea transplant.

2022 KC Group Conference

The face to face event at Moorfields and the accompanying live stream was a great success.

You can view the conference videos – Here

Members attending online took full advantage of the facility to post questions and we have done our best to answer them with the help of the speakers. You can view all the questions and answers – Here