Spring 2020 Page of 8 Kkeerraattooccoonnuuss Ggrroouupp Newsletter Spring 2020

Spring 2020 Page of 8 KKeerraattooccoonnuuss GGrroouupp Newsletter Spring 2020

Notice of Annual General Inside this issue Meeting

Saturday 28th March 11am — London This year’s AGM will again be held in the Notice of AGM lecture theatre of the Moorfields Clinical Diary dates Tutorial Unit at 15 Ebenezer Street (go up Provost Street which is across the road from Visual correction for KC Moorfields main hospital in City Road and you'll find Ebenezer Street on the next Update from Contamac corner).

Collagen Crosslinking in Wales Our guest speaker will be Dr Bita Manzouri, consultant eye surgeon at Queen’s Hospital, News of Cardiff research Romford. Bita speaks regularly at the Hertfordshire symposium, training Sainsbury’s would like your Optometrists how to treat keratoconus input patients. Her talk will be followed by the Q&A session which is always a lively feature Research news of our meetings.

The meeting will end with a free finger buffet lunch and the opportunity to talk to lots of other people with KC. Anyone affected by Keratoconus is welcome. Should you require more information contact Anne on our helpline number which is 020- 8993 4759 or email: [email protected]

Other dates for your diary Saturday April 25th 11am — West Midlands members' meeting The speaker will be Professor Martin Rubinstein on the topic of 'Keratoconus in 2020 — Where are Things Going?' As usual, the venue is the John Lewis Birmingham Page 2 of 8 Keratoconus Group Newsletter

Community Hub GRAND CENTRAL above New Street 6/6 vision is a Station. Go to the 4th floor, turn right at the top of the term used to escalator, in the corner on left by Audio & TV. For express further details ring John Thatcher on 01743 625138 normal visual Save the date! Keratoconus Group conference acuity (the 6/6/2020 clarity or Our tenth one day conference will be held in London in sharpness of the Friends' House, Euston Road (just opposite Euston station). We're excited to have a variety of speakers vision) talking about the latest research into keratoconus. measured at a Professor Alison Hardcastle will be updating us on the distance of 6 Moorfields Genetic Study, the recent publication of a major paper about the study and where this is taking us. metres. Dr Sally Hayes will be talking about the large scale study on the cornea that the research team at Cardiff University have been conducting for a number of years, If you have 6/6 and which has just been awarded a further £2.4M grant vision, you can by the Medical Research Council (MRC). In 2018, we see clearly at 6 partnered with Fight for Sight and awarded a small grant to Dr Mohamed Al-Aqaba of Nottingham metres what University to enable him to progress his research into should normally the relationship between corneal nerves and the progression of KC, so we will be hearing an update from be seen at that the team at the conference. We will also have a speaker distance. from Liverpool University telling us about the advances in Ultra-Sensitive Optical Coherence Tomography (producing highly accurate and detailed maps of the (20/20 vision cornea). In addition, one of our members, Ash Winter, means the will be talking about living with KC and the many same thing but challenges he has undertaken despite the condition. And, of course, there will be plenty of opportunities to is measured in talk to other people with KC. All in all, a day not to be feet rather than missed. Be sure to put 6/6/2020 in your diary and look metres.) out for booking details which we'll be sending out soon. Visual Correction for Keratoconus This is a summary of the talk given by Vijay Anand, Deputy Head of Optometry at Moorfields Eye Hospital, at our autumn members' meeting in London. Vijay gave an overview of the various options for keratoconus and started by listing 5 KC myths - Spring 2020 Page 3 of 8

1. You cannot wear spectacles if you have KC

2. Contact lenses stop KC getting worse

3. It's not possible to wear soft lenses to correct KC

4. Collagen crosslinking hasn't been around for very long

5. Grafts are too risky Vijay listed the clinical signs of KC - split retinoscopy reflex, curvature of the cornea, bottom eyelid pushed out, Fleischer's ring (a pigmented ring at the base of the cone), Vogt lines (fine vertical white folds in the stroma). The presence of some or all of these indicates a diagnosis of KC, but now a scan of the eye gives far more detail of the steepness and thinness of the cornea. In KC, the collagen fibres stretch, thin and bulge and the weaker the fibres, the more advanced the KC. Vijay showed slides of scans of a normal cornea and one with KC. Scans provide a contour map of the cornea, with the normal cornea being predominantly green while a KC eye will produce 'hotspots' of red where the cornea is steeper. Using a puff of air on the cornea shows how elastic the tissue becomes in KC. Vijay showed several videos which demonstrated the amount of bend in the cornea. A slide of 12 scans of KC eyes illustrated how KC is different in every individual, so needs a very tailored approach to correction. Page 4 of 8 Keratoconus Group Newsletter

The CLEK study carried in the States in 2007 was a longitudinal study of 1200 KC patients followed up annually for 8 years. It included questions on quality of life and showed how KC adversely affects functional ability on a number of different measures. A comparison with the effects of age-related macular degeneration (AMD) on physical and mental wellbeing showed very similar results.

Moving on to correction of KC, this could range from nothing to spectacles to the various types of contact lenses (soft, RGP, scleral). Spectacles can work depending on the level of KC and greater awareness means that far more people are being diagnosed with early KC these days. A review of patients with KC fitted in the contact lens clinics at Moorfields showed that RGP lenses give the best level of correction with an average acuity of 6/6 Snellen as measured on the eye chart while soft lenses gave an average visual acuity of 6/7.5 and hybrids and sclerals give an average visual acuity of 6/12 vision. The difference in visual acuity with the different contact lenses relate to the degree of KC with soft lenses used for mild cases whereas hybrids and sclerals are used on more advanced cases that cause a reduction in the visual acuity. Corneal collagen cross-linking (CXL) for KC did not get NICE approval for use in the NHS until 2013, but the original concept dates back to 1998 when a paper outlining the procedure was published by researchers in Dresden. Availability of CXL is still patchy across the UK, so Moorfields gets referrals from other parts of the country. Eligibility for Spring 2020 Page 5 of 8

CXL on the NHS depends on scans demonstrating that KC has progressed over a 6 month period, as keratoconus usually stabilises over time. CXL involves removing the top layer of the cornea followed by a combination of riboflavin drops and UV light. Moorfields has treated 6000 eyes since 2014 and 3 years follow up data shows that for the vast majority (94%), vision has stabilised and there has been an improvement in the curvature of the cornea. Some recent long term studies of You can follow CXL have shown flattening of the cornea continuing beyond 3 us on social me- dia. years in about 5% of cases. More recent developments in CXL include following the Just click on procedure with laser correction of the cornea which was the icons on our shown to give a slight improvement in both unaided and aided web site. vision. This is most likely to be used where the two eyes are unbalanced, to bring the bad eye nearer to the good eye. Another development is 'customised' CXL which involves treating just the 'hot spot' areas of the cornea which again can give improved vision and a reduction in the steepness of the cornea. A recent study demonstrated improvements in the CLEK wellbeing measures in patients who had had CXL plus laser correction. For the vast majority, Another correction option for some people may be corneal rings (Kerarings or Intacs). 10 year follow up data shows an vision has improvement in vision and a flattening of the cornea and KC stabilised and can be stabilised if the use of corneal rings is combined with CXL. However, effects such as the rings extruding or there has continued progression of KC mean that patients need to be been an chosen carefully for this option (although the rings can be improvement removed if necessary). Corneal rings result in less change in vision when used in early KC, more with advanced KC. in the The final option is a corneal graft - a treatment that has been curvature of around for more than 100 years. Vijay showed a slide giving the cornea the Australian Graft Registry data for long term survival of full-thickness grafts which gave 20 years as the average life of this type of graft. Currently, partial thickness (DALK) grafts, which are more challenging for the surgeon, are more common with a roughly 50/50 split between partial and full grafts being used for KC. As surgeons have become more expert in the procedure, DALK grafts are giving good results. Post graft, the majority of patients will have improved vision, although many will still need correction. Page 6 of 8 Keratoconus Group Newsletter

In response to questions at the end of the talk, Vijay talked about the growth in the use of mini scleral contact lenses in the last 5 years or so. The use of mini sclerals (which will only be suitable for some patients) has raised the profile of scleral lenses generally so this type of lens is being used more often for KC. The issue of eczema and asthma being more common in people with KC was also raised, especially in relation to eye rubbing. Although this is often a chicken and egg situation, eye rubbing should be avoided and treatment sought for the allergies that provoke it. Local Groups Contact Details Update from Contamac Scotland It seems a lifetime ago when I first contacted the readers of this Newsletter requesting patients to visit us to try novel lens designs Elizabeth Mair for the treatment of keratoconus and associated conditions. 01355 263438 scotland@ Over the intervening period, much has happened in the speciality keratoconus- contact lens field. Back in 2011, there was just a spark of interest in fitting scleral lenses. Once confined to an extremely small group of group.org.uk fitters, the fitting of scleral lenses is now normally the primary topic at all ophthalmological and optometric conferences around the globe when keratoconus is discussed. These lenses are now widely West Midlands available from both Hospital Departments and High Street practices John Thatcher in the UK. 01743 625138 This explosion of interest has generated new designs and with that, westmids@ the need for new materials specifically developed with this modality keratoconus- in mind. Up until now, these lenses were manufactured using group.org.uk materials designed originally for smaller, thinner corneal lenses. Contamac has led recently introduced a hyper-permeable material East Midlands called Infinite. This material was designed specifically with these newer scleral lenses in mind. It transmits nearly double the amount Patricia Lessells of oxygen to the cornea than was previously possible, yet remains 0116-271 7824 rigid to provide excellent visual results. At the same time, the eastmids@ material is extremely comfortable for the wearer. This material is keratoconus- available for all rigid lens types and to all manufacturers of lenses. group.org.uk Existing wearers who are otherwise happy with their current lenses can opt to have them made in this new Infinite material if they wish. Keratoconus is often accompanied by dry eyes and Contamac has also assisted in the development of a new coating that can be applied to contact lenses. The coating, Tangible HydraPeg, is available in the UK from two major contact lens manufacturers and can be applied to both corneal and scleral lenses. Spring 2020 Page 7 of 8

Many keratoconus patients struggle with older contact lens designs and material, not knowing that newer designs are constantly being introduced into the market at a rate that is accelerating faster than at any time I can remember. If you are struggling with comfort or vision, please do not suffer in silence, ask your practitioner whether there are any innovations in design that may help you.

Martin Conway, Professional Services Consultant Contamac is the world’s largest manufacturer of contact lens and intraocular lens materials and is based in Saffron Walden, near Cambridge.

Collagen Crosslinking (CXL) in Wales At a time when more and more hospitals in England are offering CXL on the NHS to stop the progression of early keratoconus, the situation in Wales is very different. Although the KC Group and eye health professionals stressed the importance of providing CXL at a series of meetings a few years ago to discuss the future of corneal services in Wales, CXL is currently offered on the NHS at just one hospital (the Singleton) in Swansea. So when a 19- year-old from West Wales contacted us last year to say he had been told he could only have CXL if he paid for the treatment privately, we enlisted the help of RNIB Wales who took up the case. They were able to get questions asked in the Welsh Assembly which clarified the position for young people with KC in Wales. The Health Minister stated that a report from Health Technology Wales had concluded that there was currently insufficient evidence of the long term benefits of CXL www.healthtechnology.wales/reports-guidance/corneal-cross- Remember linking/. This is despite CXL having been approved for use in the that you can NHS back in 2013 and the widespread provision in England. watch videos However, the minister did confirm that patients from other of previous health boards could be referred to Swansea or to hospitals in conference England for CXL with the use of the Individual Patient Funding talks on our Request procedure. The recommendations of the Health YouTube Technology group are due to be reviewed in the coming year, so channel or at the KC Group will continue to press for these to be changed, tinyurl.com/ working with health and other professionals. In the meantime, if kcconf18 you are a KC patient in Wales and are told that CXL is not available on the NHS, do use the information here to challenge that. Page 8 of 8 Keratoconus Group Newsletter

Cardiff research news The Medical Research Council (MRC) has awarded Cardiff University’s School of Optometry and Vision Sciences a grant valued at £2.4 million for a large scale study on the cornea. The aim of the research is to develop new technologies and techniques to better understand the function of the cornea and other collagen-rich tissues. The research will also look to develop novel therapeutic strategies for the treatment of connective tissue disorders including developmental abnormalities, disease and abnormal healing processes. The team will also continue to run, on behalf of the ophthalmological community, the UK Cross- linking Consortium to drive towards the best possible treatment for keratoconus. Sainsbury’s Argos would like your opinions on usability The supermarket Sainsbury's and home retail store Argos would like to talk to people with visual impairments like KC to help them build web sites and mobile apps that work well for everyone.

If you are interested to take part and would be open to talking about your needs and preferences for using the web please contact Bryn Anderson on 07449 346745 or [email protected].

Face to face conversations would take place in central London and your travel expenses will be covered. If you would prefer not to travel let Bryn know and he can arrange a remote session over the phone or via a screen-share. Research news You may remember reading about the Keralink study in previous newsletters. This is the research project looking at crosslinking (CXL) in children and young people aged 10—17. Keralink is the first study in which young people were randomly assigned to the CXL group or to the control group whose vision was corrected with glasses or contact lenses. Initial funding was for each young person to be followed up for 18 months in order to compare outcomes in the two groups. Keralink has now received funding for a further 30 months of follow up, which will give very much better information about the rate of progression of KC in young patients and the effectiveness of CXL for this group.

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