The day you’re diagnosed with keratoconus can be one of the most frightening days of your life. With more questions than answers, many people feel despair and anxiety over their newly-diagnosed eye condition.
But what do you really need to know and how can you find the answers to the questions you’re too afraid to ask?
Will I go blind?
Because keratoconus is a progressive condition, meaning it gets worse over time, most people assume that it’s only a matter of time before they need a white stick and a guide dog.
But the reality is that even though this condition DOES get worse, it doesn’t keep getting worse forever. The usual pattern is that the condition shows up in your teenage years and has stabilised by your late-20s.
The other essential thing to remember is that, quite often, the disease is very mild and progresses very slowly indeed. In fact, it is often so mild that it’s not even picked up unless you have your corneas mapped for laser eye surgery.
That’s not the case for everyone, and certainly there are plenty of cases of rapid progression over a relatively short period of time, especially during the teenage years. It is therefore vitally important to have your eyes closely monitored from the time of diagnosis on, to measure the rate of change over time.
When will I need a corneal transplant?
Most likely never. If the disease is managed properly from the start it is extremely rare that you will ever need a corneal transplant. Corneal transplant is not 'a fresh start' or quick fix, and in fact is a last resort treatment option reserved for when your better eye just can't see well enough for day-to-day activities. This procedure involves a lengthy settling down period and, depending on the outcome, you may still need to wear contact lenses over the graft in order to see well.
Seeing an expert practitioner from day one will ensure you rarely if ever have to look at getting a corneal graft. Properly measured and fitted glasses and contact lenses can provide clear comfortable vision in the vast majority of keratoconus - even severe cases.
A corneal graft or transplant usually lasts on average 10-15 years the first time you have one - providing it is a successful procedure. After that you will typically need another graft. The second graft usually lasts about half as long as the first, until it fails. That's why a responsible eye care practitioner will try to avoid an initial transplant for as long as possible so that you can expect to see well throughout your life.
Will I lose my driver's licence?
As long as your eye condition is properly managed it is highly unlikely that you will ever lose your licence - even in severe cases.
Will I pass my exams?
Like the previous question, it is very rare that keratoconus impacts your vision enough to prevent you from pursuing the study or career of your choice. The scenario would have to be that your cornea became scarred (see above) and required a graft and that the graft failed. Even in severe disease this is almost unheard of. If a graft fails, it is usually later in life - an important reason to steer clear of a graft / transplant for as long as possible.
How soon do I need to have corneal collagen cross linking?
This depends on your age and whether your condition is still progressing - or getting worse. If you're not diagnosed until your 30's or older, chances are your disease has plateaued and won't get any worse. In this case, corneal cross linking is not for you.
However, if you're eyesight is rapidly worsening and you are in your teens, collagen cross linking can be a very effective way to stop it from getting worse.
In certain cases of keratoconus, this procedure can be indicated for people in their teens. It is only useful, however, if your disease is DEFINITELY worsening. If your eyes have stabilised, there is absolutely no indication to have this procedure.
Collagen cross linking is a surgical procedure that involves strengthening your cornea by linking its collagen fibres more tightly.
Will my kids have keratoconus too?
Maybe. This condition does have a genetic component and a milder form of the condition is often seen in other family members. But it is also known to be strongly associated with allergy and eye-rubbing. If you can avoid the eye-rubbing - talk to your therapeutically endorsed optometrist about anti-allergy eye drops - then you can lower your risk of developing this condition (and if you do develop it, the risk of progression will be lower).