Most of us will be familiar with keratoconus to some degree, depending on the type of practice we are based in; however, I want to share some personal learnings about a side to this condition which was new to me until recently.
I fitted my first keratoconic patient with contact lenses back in 1995 as a newly-qualified contact lens optician – armed with a fitting set of small corneal gas permeable lenses, some basic theory on three-point touch, and a healthy supply of curiosity and optimism. As the patient and I were both happy with the process and outcome, we went back to our daily lives without giving it much further thought. But the memory has always stayed with me, as it was my first step towards a career filled with interest in fitting contact lenses for this condition.
Fast forward to today and I know a lot more about fitting patients with keratoconus. However, recent work with the Keratoconus Self Help Support Group, and speaking with two of the group’s more active members, has taught me that I’ve still much to learn about the patient experience.
My first new learning was that time really matters. A successful fit may take up to a year to complete, due largely to appointment availability in hospitals in the NHS (private practice differs, but this is available to fewer patients). Whilst this time is passing, the patient may be missing out on life. Take for example the patient who missed out on teaching her young son to swim because she was unable to see well enough to keep him safe in the water. The clock is ticking between appointments, and there is no way to get that time back and revisit those parenting milestones.
I also learned that keratoconic patients will invariably wear their contact lenses for longer than recommended. The average soft contact lens patient can remove their lenses in the evening and wear their spectacles, but this isn’t an option for keratoconic patients. Instead, they may use strategies such as wearing one contact lens for eight hours and then the other for eight hours if comfort is a challenge; the alternative of not seeing clearly for eight hours simply isn’t an option. If you take a moment to imagine how this might feel, it becomes much easier to empathise.
Lifeline for patients
The Keratoconus Self Help Support Group is a registered charity (10572629) and featured on DO Online as Eye Health Care Charity of the Month in June this year. It provides members with practical and emotional support, serving as a ‘lifeline’ for patients.
Support ranges from legal matters on reasonable adjustments at work to how to get the most from those all-important contact lens appointments. Monthly drop-in Zoom meetings are easy to access and provide a regular opportunity to talk openly. As keratoconus affects roughly one in every 2,000 patients, eyecare practitioners will almost certainly see a keratoconic during their career, providing the opportunity to direct them towards the group for support.
The advent of corneal cross-linking has made keratoconus a preventable disease, but this relies on an early diagnosis by corneal topography. If your practice has a topographer, please ensure screening is available to children at their routine eye examinations, so any changes can be detected early. The steepening usually begins inferiorly, so by the time it is detectable by retinoscopy reflex or keratometry, it will be affecting the central 3-6mm of the cornea within the pupil area. By then, there will already be a significantly negative impact on the patient’s visual acuity.
The Keratoconus Self Help Support Group is available to all patients. There is no charge to access the service and the team can be reached by calling 0208 8993 4759 or emailing anne@keratoconus-group.org.uk. There is also a downloadable poster on the charity’s website, which can be displayed in your waiting area. Visit www.keratoconus-group.org.uk
Pauline Bradford FBDO CL FBCLA AFHEA is ABDO regional lead in the South West of England, and works as professional services specialist for Scotlens. Email pbradford@abdo.org.uk