Autumn 2020 Page of 8 KKeerraattooccoonnuuss GGrroouupp Newsletter Autumn 2020

Keratoconus and Dry eyes Inside this issue Our main newsletter article is usually a summary of a presentation we've had at one of our members' meetings. Covid-19 has meant no meetings have been possible this KC and dry eyes year, so we are very grateful to Sara Maio Lockdown update for writing about keratoconus and dry eye, something that affects many of us. Fight for Sight 2019 Small Grant Award Author: Sara Maio, optometrist and contact specialist at Moorfields Eye Hospital KC Coffee Mornings (Bedford site)

Keeping in touch More than half of the with keratoconus report the need to rub their West Midlands Group eyes due to ocular discomfort symptoms Moorfields Eye to Eye Walk such as itchiness, burning and dry eyes. There is recent evidence that suggests that this ocular discomfort could be linked to the presence of dry eye. This is particular important in patients with keratoconus as we know that eye rubbing is one of the mechanical factors contributing to keratoconus progression.

Over the past two decades, the Tear Film & Ocular Surface Society (TFOS) Dry Eye Workshop II (DEWS II) sought to establish a global evidence-based consensus of multiple aspects of dry (DED). In 2017, a report has been published defining dry eye as a “a multifactorial disease of the ocular surface characterized by a loss of homeostasis of the tear film, and accompanied by ocular symptoms, in which tear film instability and hyperosmolarity, Page 2 of 8 Keratoconus Group Newsletter

ocular surface inflammation and damage, and neurosensory abnormalities play etiological roles.”

many patients with Vicious circle of DED. Image reference: keratoconus https://www.opticianonline.net/cet-archive/5405 heavily rely on Tear osmolarity (or tear saltiness) represents the such devices balance of production, evaporation, absorption and for vision drainage of the , which leads to a dynamic correction equilibrium in the tear film. Tear hyperosmolarity, where this balance is disturbed, is regarded as the central mechanism of dry eye. A vicious circle of events (Fig.1) occurs where the tear hyperosmolarity and inflammatory mediators induce dry eye symptoms, causing damage to the ocular surface. In the ocular surface, different structures in the , and lids play an important role in tear film stability. If the ocular surface is disrupted, a scenario of tear film instability occurs perpetuating this vicious circle.

One of the leading causes of DED is meibomian gland dysfunction (MGD), usually associated with . MGD occurs when the glands in the that produce the oily component of the tears become obstructed causing the watery component of the tears to dry out. Autumn 2020 Page 3 of 8

Blepharitisis a condition characterised by the inflammation of the edge of the eyelids. Interestingly, such conditions are also prevalent in patients with keratoconus. A study by Mostovy and colleagues showed that MGD and blepharitis are more common in keratoconus participants compared to healthy controls (24% vs 2.8%).

Another possible cause for DED is goblet cell deficiency, also called mucin deficiency. Mucins are produced by the goblet cells located in the conjunctiva and they are an essential component in the tears that allow them to lubricate the ocular surface during blink due to their anti- adhesive properties. Researchers have found a reduction in goblet cell density in keratoconus patients. They also found that the existent goblet cells produced less mucin into the tears, which can explain the tear instability and more severe symptoms of dry eye when compared to normal controls.

There are many commercial available artificial tears designed with the intent to mimic the function of mucins, for example, Systane® and Systane Ultra® (that contain Polyethylene glycol, Hydroxypropyl Guar); and Hylo-tear®, Hylo-Forte®, Optive® (containing Sodium Hyaluronate). There are still some aspects regarding the biochemistry of the tears that are not well understood, so more research is being done in this field. Ultimately, the goal is to find a therapeutic agent that is able to increase the mucin production in the eye.

All of these aspects regarding the ocular surface and its interaction with the tear film play a crucial role in the success of wear. This is rather important in the case of many patients with keratoconus who heavily rely on such devices for vision correction. For many, wearing contact lenses exacerbate dry eye-related symptoms, therefore, a thorough examination of the ocular surface and a evaluation of the tears is critical in order to identify and manage potential causes in an attempt to increase contact lens tolerance.

Patients tend to use over the counter ocular lubricants and artificial tears in order to alleviate symptoms. Some Page 4 of 8 Keratoconus Group Newsletter

Generate donations artificial tears can work better than others in terms of to the KC group symptoms relief, according to patients’ reports, so there are many products in the market with different formulations. when you shop! Despite this, experts suggest that more research is needed in order to systematically determine if one artificial tear formulation is superior to another. It is recommended to use preservative-free formulas as some preservatives (e.g., benzalkonium chloride) can exacerbate DED. Simply visit smile.amazon.co.uk and select There are also other actions that can be taken in order to “Keratoconus Self- manage specific conditions. For instance, in the presence of Help and Support MGD/blepharitis, regular -warming therapy, lid massage Association”, and and lid hygiene using appropriate lid products can improve Amazon will donate us a small percentage of symptoms. I have received positive feed-back from patients your purchases! who have adhered to this therapy, however there has only been one double-masked, randomised, controlled trial of lid hygiene therapy for patients with MGD, thus more research is needed to confirm efficacy of this treatment option.

Or if you don’t shop on Amazon, why not try out Other factors like systemic conditions (eg acne rosacea, Easyfundraising at Sjögren’s syndrome, rheumatoid arthritis) and medications easyfundraising.org.uk? can also contribute to a poor contact lens wear outcome due to their impact on the tear film and ocular surface. You can choose from 100s of retailers, and In my clinical practice, I tend to find many contact lens we get donations from wearers who have learnt how to cope with symptoms of them if you checkout after visiting the discomfort and intermittent blurry vision and who associate easyfundraising web their symptoms with the condition/lifetime of the lens itself, site. Some donations, or with keratoconus progression. Nonetheless, I have found particularly from that, in general, these symptoms are indeed associated with insurance companies the state of the ocular surface and quality of the tear film. can be really good, as Addressing those aspects showed an improvement of lens much as £40! comfort and vision.

Furthermore, the use of different types of contact lenses for keratoconus can also improve outcomes: from soft contact lenses, to rigid gas permeable (RGP) corneal lenses and Not shopping? Then sclerals (from corneo-sclerals, to mini-sclerals and full use easysearch.org.uk diameter), piggybacks and hybrid lenses. Each type of lens to replace Google— presents its pros and cons, therefore an individualised they’ll donate 0.5p to us for every search you approach should be considered. make! Autumn 2020 Page 5 of 8

So if you have keratoconus and have been noticing dry eye- related symptoms (even if mild to moderate), do not hesitate to discuss it with your optometrist and cornea specialist. I have encountered many patients who are not aware of the important role that the tears and the ocular surface play in the management of their condition and in the success of their contact lens wear. You can follow us on social Lockdown Update media. Naturally, we are very disappointed at the cancellation of our planned conference in June. We had put together a fantastic Just click on programme with speakers coming from all over the country. the icons on our The good news is that we secured a grant from the National web site. Lottery and they have confirmed that we can retain the funds to reschedule the conference in 2021. We will keep you updated.

We were also disappointed to have to cancel our AGM and speaker meeting in March. We were hoping to hear from Bita Manzouri, consultant surgeon at Queens Hospital, Romford, who has a wealth of knowledge about KC. Hopefully, we can rearrange her talk in 2021. From a technical point we should have held an AGM in March; this is a problem faced by many bodies. We decided to resolve this by having a Zoom meeting of the committee to take the decisions that would have been made at the AGM. These decisions will be ratified at our next general meeting to be held when practicable in 2021.

We are very fortunate in that we have no overheads so the lock down has had no effect on us financially. It has made us think about how much we have done in the last few years, to a large extent thanks to Amy Marsh (nee Musto) and her employer Barbican Insurance and it is worth recapping what we have achieved. The donations financed our conference in 2016 and enabled us to contribute £4,000 to the Moorfields/ UCL Genetic Study. Another exciting venture was our collaboration with Fight for Sight where we have contributed £15,000 towards two small research grants. The first, to a team at Nottingham university, was examining the relationship between corneal nerves and the progression of KC. The researchers on both these projects were due to talk about their findings at our conference in June. The second grant, Page 6 of 8 Keratoconus Group Newsletter

partnering with Fight for Sight, was to fund research into improving for KC; more of that later.

Another important project has been to fund the training of NHS optometrists in the specialist fitting of scleral lenses. Many of our members are aware of Ken Pullum who has dedicated himself to improving the lives of KC patients by developing scleral lenses. His story is fascinating; fed up with being unable to acquire the right kind of lenses, he bought his own lathe to make his own. He then Local Groups started a company producing “Innovative Sclerals”. The project Contact Details was so successful that it was bought out by Bausch + Lomb who Scotland continue making the product. Ken continues to devote time to the NHS and runs a twice yearly symposium to train optometrists in the Elizabeth Mair art of fitting KC patients. Because of financial restraints the NHS are 01355 263438 often unable to sponsor their newly qualified optometrists so we scotland@ have been able to fund four places per year. The symposium is run keratoconus- over three days, where seasoned practitioners pass on their group.org.uk knowledge and experience of dealing with our needs and the less obvious problems.

West Midlands Fight for Sight 2019 Small Grant Award John Thatcher

01743 625138 As mentioned above, we have part funded this award and the westmids@ recipient is Dr Ahmed Abass who is undertaking research to improve keratoconus- glasses for KC. Dr Abass recently presented his idea to our group.org.uk committee. He explained that he was an engineer and not an eye specialist and he felt that it needed someone outside the discipline to make this kind of paradigm shift. He East Midlands used the following diagram to explain how “the current method of Patricia Lessells correcting the eye’s is based on the assumption that 0116-271 7824 the lowest and highest power meridians in an astigmatic visual eastmids@ system are always at a right angle to each other”. He explained keratoconus- that this is rarely the case and if glasses could be made to take group.org.uk account of the true angle then this would improve the visual outcome. He went on to explain that working closely with the topography team at Liverpool University, it was possible to get more accurate measurements and using advanced engineering techniques. This information would help engineers produce bespoke lenses that are designed based on the principle of ‘light raytracing’ to further enhance the result. Autumn 2020 Page 7 of 8

Dr Abass believed that these methods could improve vision by one or two lines on the Snellen Chart. This may not sound much but as many of us know, the possibility of having such an improvement without contact lenses could transform some lives.

You can see the Liverpool University press release on our website. https://www.kcgroup.org.uk/index.php/2020/05/04/ engineers-to-develop-spectacle-lenses-for-keratoconus-patients/

KC Virtual Coffee Mornings Remember With the postponement of our physical meetings, David Gable that you can decided to try a Zoom meeting titled 'Coffee with David'. We watch videos have now held two meetings via Zoom and they appear to have of previous been successful. While we are unable to meet in person, this is conference an ideal way to discuss all things keratoconus. talks on our YouTube The next meeting is scheduled to take place on Saturday 19th channel or at September at 10:30am. At the moment, we plan to repeat tinyurl.com/ them at six weekly intervals. If you would like to take part, kcconf18 simply email [email protected] and we will send you a link. Page 8 of 8 Keratoconus Group Newsletter

Keeping in touch At the moment, there are no other 'dates for your diary' to report in this newsletter. We hope to reinstate the conference and other meetings just as soon as we can. For any 'stop press' information, do keep an eye on our website www.keratoconus-group.org.uk where you'll find the latest news. The website also has a wealth of other information, including an archive of many of our past newsletters and videos from our past conferences. So do take the time to explore what's there. You can also talk to other people with KC on the website forum www.keratoconus-group.org.uk/forum

You can also contact us with any queries by e-mailing [email protected] or by ringing the helpline number 020-8993 4759. West Midlands Group John Thatcher has been developing this group which has gained popularity to a large extent by having the perfect venue in the John Lewis store above New Street station. As many of you will know, John Lewis have permanently closed this store and our perfect venue has disappeared. We are hopeful that a replacement venue can be found so that these group meetings may continue. Moorfields Eye to Eye Walk Our one and only activity this year was this walk. Three of us completed the 14 Mile Walk and Peter Budge did the 4 mile route. However, he put us to shame by raising the majority of the £1,000 we collected.

It is always an enjoyable event and you can register now for the next one on 21st March 2021 by visiting:

https://moorfieldseyecharity.org.uk/support-us/fundraising-events/register- your-interest-for-eye-to-eye-2021

© 2020, UK Keratoconus Self-Help and Support Association

www.keratoconus-group.org.uk

PO Box 26251, London, W3 9WQ. Telephone 020-8993 4759 A registered charity in England and Wales (No. 1057629), and in Scotland (No. SCO39552)