Here at The Eye Practice, we asked our keratoconus Facebook community what bothered them most about their eye disease and the pain was evident. This post looks at some of these pain points.
While problems with vision were most common in the responses we received, discomfort from glare and dust was also a problem.
Don't forget to have a look at our main keratoconus page for an up to date perspective of keratoconus management.
Most common concerns with keratoconus
Imbalanced vision across both eyes
Keratoconus rarely effects one eye only but there can be marked asymmetry, where the disease is much more pronounced in one eye than the other. This is more of an issue if your ‘bad’ eye happens to be your dominant eye – the one that sends most information to the brain. If the dominant eye is more blurry than the non-dominant eye, it can be hard for your brain to switch over and use the good eye. Another problem keratoconus patients face if they wear glasses, is different image sizes. The stronger the spectacle lens, the stronger magnification or minification effect it will have on what you see. The result is that the two eyes can see two different size images of the same object, and this is difficult for your brain to process. The other thing that can cause an imbalance between the two eyes is wearing the wrong prescription in your glasses or contact lenses. Less experienced practitioners can often over-correct your distance vision, resulting in eye-strain, headaches from the imbalance. To address this, it is always recommended that you choose a highly experienced keratoconus specialist, who sees patients with your eye disease on a daily basis and can fit you with the best possible pair of contact lenses.
Hard contact lenses (RGPs) can be your best friend when you have keratoconus as they can allow better vision than glasses or soft contact lenses, BUT, they can irritate already sensitive eyes. Add a little glare from bright sunshine or harsh lighting and you can literally end up in tears. Protective sunglasses can help a lot, as well as ensuring you have the best possible lens fit. Sometimes ‘piggy-backing’ can make a big difference to discomfort from glare. This involves placing a thin disposable soft contact lens onto the sensitive cornea and the hard lens on top. You get the good vision without so much of the irritation. We have also fitted piggy back lenses the other way around with the soft lens on top – to stop the hard lens from rubbing against the eyelids. Don’t try this without the supervision of your keratoconus specialist as the hard lens fit has to be modified to allow for a sift lens underneath.
Dust and windy conditions can be disastrous for hard contact lens wearers, especially keratoconus sufferers who often also suffer from ocular allergy and inflammation. Piggy-back lenses (see above) can help, as can scleral or mini-scleral contact lenses. These lenses, while still hard, are large enough to vault the sensitive cornea entirely and bear their weight on the white of your eye. They are not cheap, but fitted properly they can be a very comfortable option and provide better vision than other lenses.
Poor vision for detail especially in low light
Sometimes, no matter how good your contact lens fit, your vision may not be 20/20 – the level most healthy adult eyes are capable of achieving. In this case, fine detailed tasks like reading small print or road signs at night, sewing, shaving, putting on makeup, doing household chores, reading movie subtitles etc., can all be hard work. Improving the background lighting at home will help by making your pupil smaller and providing sharper focus - a bit like the aperture on a camera. This is not recommended for night driving though! Sometimes the best solution is to avoid it or have someone else drive if at all possible. Many people with keratoconus are going around in glasses or contact lenses with the wrong prescription and could actually see a lot better with a properly measured and fitted lens. Having regular follow ups with your keratoconus specialist will ensure your script is up to date. Contact lenses are usually required to give good vision in most people with moderate to severe disease so make sure your practitioner is up to the task. But even if you have to take your lenses off to give the eyes a break, make sure your glasses are fully up to date.
Lenses Keep Falling Out
When this is occurring regularly it means that the lenses are inappropriately fitted. In fact it is also a sign that the lenses could be damaging the eyes by rubbing them excessively. This problem can be corrected in a number of different ways. Either just a proper refit of the same type of lens, or choosing the piggyback or scleral lens option will also make big in roads in fixing this very annoying problem.