5 Things Every Person With Keratoconus Should Know

The majority of keratoconus patients have never heard of the condition at the time of their diagnosis.  Unfortunately, this often creates a sense of shock and fear amongst keratoconus patients. In my practice, I see 5-10 keratoconus patients per day and I can clearly say that for a lot of patients, the fear at the time of diagnosis doesn't always go away easily. It's for this reason that I always try to reinforce the key aspects of the disease and how we manage it. Here are the 5 things every person with keratoconus should know:

1. You will NOT go blind

Every person with an eye problem at some stage worries that they will go blind. If you are reading this and you have keratoconus listen to me clearly - you will not go blind. Keratoconus is NOT a blinding condition. It is a serious condition that requires hands-on management, but with proper management it is completely manageable. 

2. Keratoconus is a bit of a pain in the backside

Having keratoconus will test your patience at times. Sometimes managing keratoconus is simple, but for some patients it can become more complicated. Unlike many other eye conditions it often isn't as simple as popping your glasses on and off as you please. For many patients contact lenses need to be used most of the time, and sometimes (but not often) surgery may be required. Having said that, the days of uncomfortable contact lenses are behind us for almost all patients so once you are used to wearing your lenses, the annoyance of putting them in and out also becomes a thing of the past. 

3. It is wise to budget for the disease

Depending on the severity of your disease, having keratoconus will usually cost $400-$700 per year averaged out over your lifetime. The larger costs will be at the start, and it generally becomes cheaper as you get older. 

Costs may include glasses, contact lenses, eye drops, consultations, cornea scans, crosslinking, and rarely surgery. You will find that overall caring for your keratoconus works out to be about 1.5 to 2 times more expensive than being short-sighted. One of the best ways to minimise the cost of having keratoconus is to make sure you are being looked after by someone who works with keratoconus often, as they will generally have a better idea of the systems available to seek assistance if you are unable to afford private care. Sometimes, being referred to public hospital eye clinics can save you substantial costs, however each clinic provides different services, so speak to someone who knows what is available. 

Also, look at the long-term picture of how you manage your keratoconus. For example, having corneal crosslinking early on to stabilise your corneas will save money down the track through not having to change your contact lenses as often. Also, some of the more advanced contact lenses like scleral and miniscleral lenses last much longer than other types which makes their initial cost worthwhile. 

4. You usually have multiple options

There was a time in the past where the only options for managing keratoconus were uncomfortable small hard contact lenses or corneal transplants/grafts. This has completely changed. We now have crosslinking for stabilising your condition, very comfortable scleral, miniscleral and hybrid contact lenses, soft contact lenses such as Kerasoft IC, PTK laser, toric lens implants, partial thickness corneal transplants and even developments in spectacle lens technology for keratoconus such as Shaw lens. It's for these reasons that every keratoconus patient should be able to see clearly.

5. Your eyes should be in the right hands

The average Optometrists will see one of two patients per year with keratoconus. Those of us who specialise in managing the disease will see up to 10 keratoconus patients per day, so be aware that experience will vary widely between practitioners. Not only that, managing keratoconus requires specialised equipment which not all typical optometry practices will have.

It is difficult as a person with keratoconus to know whether you are being properly looked after. My best advice is to remember that it is ok to ask your optometrist or ophthalmologist how many keratoconus patients they typically see. It is also ok to get more than one opinion on your eyes. If you're in Queensland and we can help, we are always happy to look after new patients. Or if you are from interstate and you would like to ask if we know of any recommended optometrists or ophthalmologists in your area, feel free to contact us any time.