Helping people live with Keratoconus
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
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.
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.
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
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
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.
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
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
Our research into the genetic basis of keratoconus is ongoing. We know that genetic factors determine the risk of developing keratoconus, but environmental changes (e.g., eye rubbing, allergy) can then affect the rate of progression and the severity of the keratoconus. In 2021 we published the results of the world’s first large genetic study of keratoconus, which identified 39 genetic signals that influence the risk of developing corneal change. The study involved the participation of 4669 individuals with keratoconus, the majority from Moorfields Eye Hospital and the UK, and several other centres worldwide. We want to extend these studies and advance this research to learn more about the disease. One method is to enlist the help of families with multiple members affected by keratoconus. If you have three or more close family members diagnosed with keratoconus, such as parents, brothers or sisters, or children, we would be happy to discuss your participation. Participation would involve examining the eyes to confirm the presence of keratoconus and a small blood test to analyze your DNA. We hope that knowledge of the genetic changes that increase the risk of keratoconus could provide a way to identify patients at a stage where intervention could prevent visual loss and potentially lead to more effective treatments. For more information contact Professor Stephen Tuft (s.tuft@ucl.ac.uk).
