A diagnosis of keratoconus can knock the bottom of out you. But it’s not all bad news.
You will not go blind
The most important thing to realise is that keratoconus doesn’t make you go blind. Even if you are in the rare position of having advanced disease with corneal scarring or a failed corneal graft, there are options. The vast majority of people with this eye condition will live normal, full lives, doing all the activities they want to do, whether that’s sport, dance or just doing the job they love.
You will not keep getting worse all through your life
Although the exact cause of keratoconus is not understood, it is known to have a genetic component and to come on in puberty. The disease progresses through the teenage years and twenties and then stops getting worse. Whatever way your vision is by your late twenties is likely to be as bad as it’s going to get. The key thing is to make sure you minimise progression (or worsening) of the disease in your teens / twenties, so it doesn’t get too bad in the first place.
You can stop the progression
If you have developed this eye condition, it is vital that your disease is carefully monitored over time. Your keratoconus specialist will monitor your progress regularly using a series of diagnostic tests. If you are getting worse, you should be referred to a corneal surgeon to discuss a surgical procedure called Corneal Collagen Cross Linking. This won’t fix your eyes or make you see any better (in fact it can make your vision more blurred for a while) but it will stop the disease in its tracks, meaning you won’t get any worse. The earlier this can be done, the better. Mid to late teens is the most effective time to have this done (provided your keratoconus is definitely worsening) but many people in their 20s also have this procedure.
You probably won’t need a corneal transplant
It is vital that you see an experienced keratoconus expert for your contact lens fitting. Hard RGP contact lenses are the mainstay of successful management of this disease and keep the vast majority of patients out of needing a corneal transplant. Transplants only last a certain length of time (typically 15 years for the first one and the life of the graft halves with each subsequent graft) so it is always best to avoid needing this procedure, or wait as long as possible before having the first graft. Many people still need contact lenses to see clearly after a corneal graft, and these can be harder to fit.
There are contact lenses even for very sensitive eyes
It is completely normal for people with keratoconus to have very sensitive eyes. They often have allergies like hay fever or eczema or itchy eyes, which can make wearing contact lenses really difficult. Even with the most experienced and expert contact lens specialist, only 50% of people with this eye disease will end up with comfortable vision in RGP contact lenses. But what about the other 50%? Contact lenses come in many designs and materials. About 10% of patients have a mild enough form of the disease that they can successfully wear a custom soft lens. Another 10% wear their hard lens on top of a thin disposable soft lens (in a piggy-back system). A further 10% wear a hybrid lens, which is hard in the centre but has a soft, comfortable edge. The remaining 20% wear scleral lenses, which are often the most difficult to fit but usually the most comfortable of all.
Keep in mind, corneal transplant surgery is a last resort in the management of keratoconus and should only be considered when all contact lenses options have been exhausted by an experienced and expert keratoconus specialist. Your regular optometrist will generally not have the range of contact lens fitting sets available to achieve the best possible fit for healthy, comfortable and clear vision.