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The Future of the KC Group

Saturday 21st October 2023 at 11am

at the Moorfields Education Hub, 1st Floor, 15 Ebenezer Street N1 7NG (the hub is opposite the main hospital – cross City Road and go up Provost Street to the next corner and the Hub is facing you on the left)

We need your help!

Do join us for this important discussion about the future of the KC Group. We believe that we have reached a watershed moment and have to take stock and decide where we go from here.

We have achieved a lot over the past 30 years and we want to continue that trajectory.

The Background

The first meetings of the KC Group were in 1991 and five years later we became a national charity. In the decades since then, we have provided information and support to thousands of people with KC through our helpline, online forum, website, newsletters, members’ meetings and conferences. We have supported research into KC and campaigned for better access to treatment, especially the supply of corneal tissue for transplants and for CXL (crosslinking). We have developed good relationships with ophthalmologists and optometrists who give generously of their time to speak at meetings and conferences, but also benefit from hearing the views and experiences of patients. So we have a lot to be proud of, especially as we have achieved all this without any paid staff, with all the work being done by a committee made up of trustees who all either have the condition themselves or have a close family member with KC. 

But the committee is ageing and getting tired! If the charity is to continue, we desperately need new people to come forward who could contribute some time, energy and fresh ideas. Do you have KC or do you have a family member with KC? Are you a health professional who could contribute your knowledge and contacts to taking the charity forward? We used to think that, with the Internet and with a treatment to stop KC progressing, the need for the KC Group would decrease. But new, exciting developments such as the potential role of AI in early diagnosis of KC and bio-engineering producing potential new ways of treating KC mean that spreading information is even more important. And the need for support also doesn’t get any less, as more and more people are diagnosed with KC and our existing members encounter new issues as they get older.

There is a serious risk to the continued existence of the charity. We are looking at a number of options, including recruiting trustees who have no connection with KC and the possibility of a part-time employee to do some of the work. But if you care about KC and value what we do, please consider if you could get involved. Come to our meeting in October and tell us what you value about the KC Group (and what we should do better!) and what you think are the most important things we should be doing in the future. Or e-mail or ring us with your ideas and with any offers of help. 

We are pleased to announce a 5th addition to our library of information sheets.

Following an increasing number of calls to our helpline, it became increasingly apparent that there was a need for a concise summary, which parents could reference when their child is diagnosed with keratoconus.

The Information Sheet can be downloaded as a pdf – here

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.

Notice of Annual General Meeting
Saturday 23 March at 11am

Our AGM and speaker meeting will be held at the Moorfields Education Hub 1st Floor 15 Ebenezer Street, N1 7NG (the hub is opposite the main hospital).  Cross City Road and go up Provost Street to the next corner and the Hub is facing you on the left. Doors open at 10:30, and there will be coffee and biscuits before the meeting starts.

Our guest speaker is Aneel Suri and the title of his talk is “What’s New in Medical Contact Lenses”. Aneel is Principal Contact Lens Optometrist at Moorfields Eye Hospital and well placed to answer our questions and will be just as interested in hearing from us in a non clinical environment. We provide a complimentary sandwich lunch which is always a good opportunity to meet other members and share stories. If you are coming please let us know by emailing anne@kcgroup.org.uk or ‘phoning her on 020-8993 4759 so we can cater for numbers.

Papers will be handed out on the day or can be viewed here –

Agenda
Minutes of last year’s meeting
Chairman’s Report
Income and Expenditure Account

Should you have any comments or questions, please email: chair@kcgroup.org.uk

This is a great opportunity to see the latest technology for people with sight problems and see what other help is available. Visit the Sight Village Website.

Queen Alexandra Colledge are delighted to be returning to Kensington Town Hall for a one day event on Tuesday 7th November 2023. Doors open at 10am until 5pm and as always, the event is free to visit and there will be a wide range of exhibitors in attendance. We would recommend that you pre-register your attendance by clicking this link

The full address of the venue is: 
Kensington Town Hall, Hornton Street, London, W8 7NX

Do stop by and say hello or help out manning the stall and chatting to visitors interested in our condition.

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

Moorfields have a new service to access it visit:
https://www.moorfields.nhs.uk/service/accident-emergency

Scroll down to this tab and follow the instructions:

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.

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