Eye Health Care Charity of the Month: June

In keratoconus, a cone-shaped bulge develops in the cornea

What is keratoconus?

Keratoconus causes the thinning and weakening of the cornea, resulting in it changing shape. A cone-shaped bulge develops in the cornea, which is typically round and dome-shaped.

The latest research shows that keratoconus is much more common than previously thought – although many cases are mild. It normally develops in teenagers or those in their 20s, and often gradually gets worse over time. The speed of change and severity of the stages of keratoconus varies between those affected.

Keratoconus symptoms include:
• Worsening of vision causing frequent changes to prescription
• Blurring or clouding of vision
• Sensitivity and glare from bright lights

Keratoconus signs can change as the condition worsens over time. The change in shape and thinning of the cornea impairs the ability of the eye to focus properly. In advanced cases, some patients may develop scarring in the cornea. All of these corneal changes can cause poor vision.

Origins of the charity

“If only I could have talked to someone else with keratoconus, maybe I wouldn’t have got so depressed and so anxious’.

Corneo-scleral topography image showing keratoconus (courtesy of Eaglet Eye)

It was this thought that led the founder, Anne Klepacz, who had had corneal transplants in both eyes, to arrange the first meeting at Moorfields Eye Hospital of what became the Keratoconus Group charity.

Around 15 people came to that meeting in 1991, including one mother with her teenage son and another with her teenage daughter – both youngsters waiting for corneal transplants and both mothers anxious to know what to expect.

As they talked to each other, and heard from those who had already had transplants, it was abundantly clear that there was indeed a need for this sort of mutual support.

From these small beginnings, at a time when there was no internet, no patient information leaflets in hospitals and few people who had ever heard of the condition, the Keratoconus Group grew – with a mission to provide support and information through newsletters and meetings.

In those early days, members expressed feeling immense relief at finding people who could relate to the various symptoms of KC – including ghosting, blurred vision, multiple images, halos and glare around light – and who knew all about the lack of understanding that someone could be fine when wearing their contact lenses but severely sight impaired without.

‘If we had a fiver for every time someone asked us so why don’t you wear glasses, we’d be rich’ – one member said.

Anxieties about the unpredictable progression of the condition were allayed by meeting other KG members, who had managed well with contact lenses and whose keratoconus had now stabilised.

Education and information

Because keratoconus (KC) develops in the teens or early twenties, that lack of understanding could have a serious impact on these young lives, with people falling behind at school or college, having difficulties coping at work, finding career choices limited, and failing to achieve their potential.

So it became clear that the charity needed to provide information – not just to each other, but also to schools, colleges, universities, employers. This led to the creation of a series of downloadable information sheets explaining keratoconus, and the adjustments needed to help the person with the condition.

View the current list of publications and resources.

With the help of Moorfields Eye Hospital, the group has produced a booklet which seeks to help those diagnosed with KC.

Download the keratoconus booklet.

Driving early diagnosis

The 21st century brought big changes. The internet meant information about KC was much more readily available, but also brought the risks of misinformation and people finding alarmist ‘worst case’ scenarios. But, most importantly, it heralded the arrival of a treatment that could stop progression of keratoconus. So the charity’s focus became campaigning for corneal cross-linking (CXL) to become widely available on the NHS.

Twenty years ago, a late diagnosis of keratoconus when the condition was already advanced, would often have a negative impact on education, employment, social life and mental health. But it did not affect the course of the condition in an individual, or how far it progressed.

Now, early diagnosis and early treatment with CXL is crucial in avoiding unnecessary sight loss. High Street eyecare clinicians are central to this in their role of referring patients with suspected keratoconus to the hospital eye service so that eligibility for CXL can be established.

Thanks to the KC Group joining forces with a group of corneal consultants to press for change, from just three hospitals in 2012 offering CXL on the NHS, today the treatment is available at almost every hospital with a corneal eye department.

What the charity does

The charity continues to provide information and support through meetings (both face-to-face and online) and organises conferences with researchers, ophthalmologists and optometrists updating members on the latest developments in treatments and the causes of keratoconus. Recordings of talks are accessible to all via the KC Group website.

The charity continues to campaign for better access to treatments and to support research. It has done this for more than 30 years – solely with volunteers. The KC Group is run by its trustees, most of whom have the condition themselves, with no paid staff and no office.

Focus on the future

The improvements in diagnosis and treatment means many youngsters with keratoconus no longer face the same difficulties as previous generations. However, being diagnosed with the condition can still be traumatic and means people need support. There are also many thousands of people with keratoconus for whom CXL came too late. As they age, they may find their condition harder to cope with and may acquire additional eye problems such as cataracts.

Thus, the KC Group continues to support all those with keratoconus and aims to promote awareness amongst practitioners, industry and the general public.

This changing environment in which the KC Group exists means that trustees are working with the Cranfield Trust to establish a new strategic direction.

Leaflets about the KC Group for display in your practice are available by emailing info@keratoconus-group.org.uk. Or you can refer patients directly to the charity by email or by ringing the helpline on 0208 993 4759.

More information can be found at www.keratoconus-group.org.uk and donations can be made here.

Feature supplied by the Keratoconus Group.