When I first developed an interest in keratoconus treatment, I had no idea the journey I was starting out on.
In the early years, we saw a couple of patients with this disease every month. We slowly built up our expertise and experience until we were seeing keratoconus patients every day, often from far away.
35 years on, I am still learning, but have successfully treated thousands of patients with this eye disease. This post looks at the key lessons I have learned during this time.
1. Every patient is unique
Like most things in life, what works for one person doesn’t work for another. There’s no cookie-cutter approach to the management of keratoconus, and each person has a different story, unique to them.
The treatment of your particular eye disease must be tailored to you. We see people with mild disease that just need a carefully-prescribed pair of glasses to meet their day-to-day needs. But others need strong medicated eye drops to control inflammation and itch before we can even attempt contact lens fitting.
Knowing when and where to refer for corneal cross-linking is one of the key things in effectively managing this disease.
We believe successful treatment comes from really listening to your story and finding a solution that works for you. The ophthalmologist of choice also must be a keratoconus specialist. They must communicate with us and always act in best interests of you – the patient.
2. We have never seen anyone go blind from properly-managed keratoconus
Cross that one off your biggest fears list. Blindness almost never results from keratoconus when managed properly. Even if you fail in contact lenses and end up needing a corneal graft, this is not the same thing as needing a white cane.
Corneal transplants come with their own set of problems. But in the hands of an experienced surgeon, the vast majority of patients do really well.
Yes, you can lead a normal life when it comes to driving, sports and careers. But you will need an accurate pair of glasses or contact lenses, fitted by an optometrist who is an expert in keratoconus.
3. There is no cure – yet
We know now that keratoconus can be successfully managed with expert care. We also know that collagen cross-linking can slow (or even halt) the disease in its tracks. But that’s not quite the same thing as having a cure that prevents or reverses the disease.
There are many new treatments in the pipeline. These include gene therapy, which looks at how the disease is triggered around the time of puberty. Stem cell research also promises novel treatments for this disease. One of the most promising areas of research (ongoing in Australia) is into the effect of eyes drops that could halt the progress of this disease.
4. The diagnosis of keratoconus is on the increase
Is there more keratoconus around now than 20 years ago?
Certainly, there are more cases of the disease being diagnosed, but this may be due to more sensitive testing equipment . Or, it could be that more people are having corneal mapping for laser eye surgery, rather than a real increase in the incidence of the disease?
Or, does modern living expose young people to more allergens and the knock-on effect of eye-rubbing? This would mean a genuine increase in numbers. Who knows?
5. Collagen cross linking during teenage years makes sense
When collagen cross linking first came on the scene over a decade ago, we didn’t know if it was just a fad. What the years have shown us is that this surgical treatment is effective in slowing or even halting the progression of this eye disease.
But, it’s not for everyone. This treatment doesn’t work unless the disease is actively progressing (or getting worse). But if your cornea is already very thin, it’s not suitable either.
Finding that sweet spot is what great keratoconus management is all about.
6. Corneal graft is the last resort
We are amazed at how keen people are – both patients and surgeons – to rush down the path to a corneal transplant. But what we’ve noticed is that the more experienced the surgeon, the LESS likely they are to perform a graft if there is any reasonable alternative.
It is also our view that a graft is a sight-saving option for many patients who have exhausted all the other management strategies.
7. Hard contact lenses are the mainstay BUT, not necessarily the best option!
Hard or RGP (Rigid gas permeable) lenses are the best management for this condition, right?
We used to think it was simply a matter of finding the right lens and the patient would be happy. But this is not what we have found over the years.
The fact is, many patients with keratoconus also have sensitive eyes. The two often go together. We see allergies, eczema, asthma, hay fever etc. far more often in sufferers of this eye disease.
And the truth is that sensitive eyes and hard contact lenses don’t always go together. It’s not a matter of getting the right fit and clear vision. It all comes down to comfort and whether you can wear the lens all day everyday for the things you need it for.
Huge sigh of relief…
So, what are the options if a hard lens isn’t for you?
There are actually quite a few options. Soft contact lenses can be worn under (or ever over) the hard lens to improve comfort. Some lens designs are a combination of soft and hard lens – a hard centre and a soft outer skirt for comfort.
8. Bigger can be better when it comes to contact lenses
Scleral lenses have been used since the 1800s but had largely fallen out of use until the last 5 years. A combination of better manufacturing equipment and mapping technology makes these lenses a much more accessible option than they use to be.
Scleral lenses are also surprisingly comfortable. These large hard lenses don’t touch the sensitive cornea at all. They are large enough that your eyelids don’t rub against the edges.
Sometimes, the most comfortable contact lens is no lens at all. A pair of glasses – if properly prescribed – can be enough for most activities.
9. Wearing contact lenses does not stop the progression
Wouldn’t it be great if, once you’d found the perfect contact lens, you never had to change it? We would love that too! New lenses are a bit like new slippers; you’re always going to find your old ones more comfortable.
But the reality is that this disease tends to progress – or get worse – over time. Lenses may need to be refitted yearly during the early years of the disease. This may stretch to 18-24 months in your 20s and less often once the disease has stabilised.
When will this be? Our experience has been that about 70% of people stabilise by their mid-20s and a further 25% by their mid-30s. Pregnancy produces hormones that may also cause a short-term progression.
Beware the poorly fitted contact lens!
Less experienced practitioners may fit contact lenses that provide good vision. BUT, these lenses may rub the centre of the cornea, making the disease progress even faster. These are often the eyes that end up needing a corneal graft.
Give yourself the best chance of avoiding a graft. Choose a practitioner who sees this disease every day and has experience to fit the lenses properly.
10. Eye-rubbing must stop!
Eye-rubbing is bad news when it comes to keratoconus. Eliminating it is key to managing your disease, but how?
Patients tell us that the itch is sometimes unbearable and that eye rubbing brings so much relief, they just can’t stop.
If this sounds like you, there are medications to stop that itch and get rid of the need for eye rubbing. Allergy (e.g. to pollens, grasses or pets) trigger the release in your body of a chemical substance called histamine – which causes ITCH. Antihistamines and other eye drops prevent the formation or release of histamine. They prevent the itch from occurring in the first place.