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 email@example.com for details.
A Photography Contest for the International Keratoconus Community
The US-based National Keratoconus Foundation (NKCF), Keratoconus Australia, and the UK-based Keratoconus Group invite anyone connected to the keratoconus (KC) community to share how KC affects perspective using photography. Patients, friends, family members, and eye care professionals are invited to participate. The objective of KC: Through My Eyes isn’t simply to collect creative images, but to help tell a story of how KC impacts daily life. The photo can focus on the challenges, express how obstacles are overcome, or share an appreciation for beauty that may be otherwise overlooked.
The KC Group will be represented at this exhibition on Wednesday the 11th October 2023, 10am to 3.30pm at Steam – Museum of the Great Western Railway, Fire Fly Avenue, Swindon, SN2 2TA. Working with local and national partners, the exhibition is designed to give local people a chance to come along and discover everything available to help them regain or retain independence. This Eye Can exhibition is part of a series of exhibitions held on a yearly basis and to date has had almost 200 visitors at each event.
Wiltshire Sight is a charity that supports blind and partially sighted people living in Wiltshire and Swindon. Our aim is to ensure our clients have the tools they need to lead fulfilling and independent lives.
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.
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
Keratoconus Support meeting at Queen Victoria Hospital(QVH), East Grinstead, Sussex
Staff at QVH have organised a support meeting for people with keratoconus on Friday 10th November 2pm – 4.30pm. Corneal consultant and clinical lead Mr Mohamed Elalfy, together with our own John Thatcher will talk about their experiences and answer questions. (Although John is now our West Midlands organiser, he had a corneal transplant at QVH more than 40 years ago).
The meeting will be in the Education Centre, which is in the main hospital on Holtye Road, East Grinstead, RH19 3DZ. A number of our members are patients at QVH, but the meeting is open to anyone with keratoconus in the South East. We hope this will be the first of many such meetings.
To book your place call 01342 414569 or email firstname.lastname@example.org
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 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
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.