What's the best cure for keratoconus? This is a question thousands of people in Australia ask every month.
Keratoconus is a disease of the front surface of the eye that causes progressive deterioration in vision. This typically begins in your teens and progresses during your 20s and 30s. It affects only 1 in 2000 of the population in a clinically significant way, so in Australia it is estimated that at least 10,000 people need treatment for this condition. The Eye Practice in the Sydney CBD, offers an expert keratoconus service to patients from around the country.
More details on keratoconus can be found here, but also read on to get the important basics.
Make sure you see an expert
Many people struggle to function in everyday life due to inappropriate treatment options or advice. An important point to consider is that most eye care practitioners see about 2,000 eye patients per year, so on average they will only come across one keratoconus patient per year. It doesn’t matter how smart you are; if you don’t involve yourself frequently with an activity you will never develop the skill to deal with it effectively and efficiently. There is no substitute for experience.
Because there is a lack of experience in managing keratoconus, often a patient with the disease will be steered in an inappropriate direction. Fortunately, you can be different!
What follows are seven vital issues in keratoconus that, if not understood, can lead to significant problems, inconvenience, grief and emotional distress. When you understand and apply these important principles you can be at ease with this frustrating condition.
This information has been put together by leading keratoconus expert Jim Kokkinakis, at The Eye Practice in Sydney's CBD:
1. You will not go blind from Keratoconus
JK: It amazes me that most of the patients I see fear that they will eventually go blind. This belief occurs simply because they have seen their vision get worse and worse so they fear that the eye condition will continue to degrade to the point that nothing can be done to recover the vision.
Some people have seen a number of eye care practitioners over time and no one has been able to fit them with contact lenses or glasses and they are too scared to pursue corneal transplant surgery. They then try to function with poor vision and believe it is only a matter of time before they will see nothing at all.
The reality is that no one goes blind from keratoconus. There are currently several options before corneal transplantation might be required, including:
2. Soft contact lenses
3. Rigid gas permeable contact lenses (when fitted properly this is the most successful option)
4. Rigid gas permeable lenses piggybacked on soft disposable contact lenses
5. Mini-scleral contact lenses
6. Intra-corneal ring segments with corneal collagen cross linking.
7. Re-prescribing glasses, soft contact lenses or rigid gas permeable contact lenses after intra-corneal ring segments have been installed in your cornea
If corneal transplantation is finally required, its success rate is greater than 95% when done by an expert corneal surgeon. Please note that glasses or contact lenses are normally required after surgery, but visual quality is normally good to very good once the eye has healed. It is important to understand vision correction is still required in most cases. Somewhere along the line we always get reasonable vision.
2. Keratoconus does not progress forever
JK: Typically when I see a patient with keratoconus for the first time, they have been referred by another optometrist or ophthalmologist (eye surgeon). They are usually in their teens and they are accompanied by their parents.
Keratoconus usually begins either slowly or aggressively as a teenager during puberty. In keratoconus, the front window of the eye (the cornea) becomes thinner and eventually destabilises and becomes irregular in shape, which causes a deterioration in the vision.
The typical person assumes that the condition will continue to progress forever but this is not the case. When I see a teenager accompanied by their parents I normally have a long and careful discussion, as everyone is stressed and upset.
I have examined and followed thousands of people with keratoconus for 35 years and my experience has been that for the majority of people, their keratoconus usually stabilises quite well after twenty-five years of age.
But there are a couple of exceptions such as when:
- Poorly fitted RGP contact lenses are used
- The affected person regularly and aggressively rubs their eyes - often due to uncontrolled allergy
- The affected person becomes pregnant, BUT, progression only occurs in some cases
Having read many articles on keratoconus in the literature and on the internet it is common to read that keratoconus progresses through to forty years of age and beyond. This is rare in my experience when lenses are fitted properly and the affected person and his/her family have careful counselling about the potential damage that is done by eye rubbing.
The moral of the story: “I promise to fit the lenses properly as long as you significantly decrease eye rubbing.”
3. Significantly decreasing eye rubbing is essential!
People that have keratoconus often also have allergies. Hay fever, skin allergies, and asthma are common. With these conditions come itchy eyes. Another group of people that has keratoconus does not seem to have allergies but they do have a habit of eye-rubbing. Aggressively rubbing eyes can cause or progress keratoconus. Therefore it is very important to have strategies to decrease the urge to rub.
It is theorised that rubbing eyes that are predisposed to keratoconus traumatises the cornea causing it to thin and become distorted in shape. This causes a distortion in vision that often cannot be corrected with glasses.
One thing is to know that eye rubbing is a problem and another is putting a halt to it.
People that get itchy eyes will tell you that it drives them mad and once they start they cannot stop until their eyes are red raw. It is this vicious cycle that can progress keratoconus.
Decreasing eye rubbing cannot be overstated. You need to stop and you need to stop now. We've written about strategies to reduce eye-rubbing HERE.
4. Not all contact lens solutions are the same
Impeccable contact lens hygiene is critical to the ongoing success of contact lens wear and consequently good vision. It is obvious that keeping the contact lenses clean is important to maintain good eye health, but did you know that the solutions themselves often cause toxic or allergic reactions, which can make contact lens wear from uncomfortable to unbearable?
Contact lens solutions are preserved so that they remain sterile. Preservatives kill live bacterial cells but the eye is also made up of cells, which can be affected by these same preservatives.
Preservatives in contact lens solutions can make eyes go red, feel gritty and itchy. In cases like this I recommend a quick rinse with an unpreserved lubricant before inserting the lens into the eye. By rinsing the lens with an unpreserved solution before insertion, this dilutes most of the preservatives off the lens after the overnight disinfection process and therefore they do not then have the opportunity to cause an adverse reaction.
Remember what we said before. Many patients with keratoconus suffer with allergies and are therefore more sensitive to irritants. Unfortunately the very solutions that protect our eyes from infections can also cause an allergic or toxic reaction. The procedure as described before though is not too difficult and often creates significant improvement in comfort, leading to successful contact lens wear.
5. One-step cleaning solutions are not a good idea
JK: When I start a contact lens patient on a cleaning system I try to keep it simple, but not too simple! Many solutions today are promoted as “one step” and “no rub”.
For rigid gas permeable lenses I believe these types of solutions do not make any sense. These types of lenses normally have a life expectancy of at least twelve months. It is important to rub them with a detergent-based cleaner. The cleaner then needs to be thoroughly rinsed off with saline and then the lenses need to be soaked in a disinfecting solution overnight. Often a protein-removing solution also needs to be added to keep the lenses squeaky clean.
Unfortunately many patients are lured into the easier “one step” “no rub” solutions, innocently thinking that their lenses will be cleaned properly. This is not the case and will significantly shorten lens life and cause eye irritations in many patients. It is a bit like saying to wash your hair only with conditioner and never use a shampoo.
6. Your optometrist should professionally polish your contact lenses
This is very important when keratoconic contact lenses are involved. Your practitioner should be pre-booking you at least every six to twelve months.
Remember this: most people that have keratoconus are nearly 100% reliant on their rigid gas permeable contact lenses. Often glasses do not work very well and consequently contact lenses are worn during all waking hours, seven days per week.
Professionally polishing rigid gas permeable lenses using aluminium oxide is an often forgotten but extremely effective troubleshooting tactic. Despite your best efforts in cleaning, rigid gas permeable contact lenses can either deposit with natural tear secretions or lose their wet-ability. Both of these circumstances can cause significant discomfort and fluctuating visual quality.
Once the lenses have reached this state there are really only two options:
- Throw the lenses away and buy a new pair
- Professionally polish the lenses and resurrect them.
By polishing the lenses, their surfaces are returned to their original pristine condition and you can once again wear the lenses comfortably.
Polishing rigid gas permeable contact lenses is a highly technical activity. If not done properly the surface of the contact lenses can be burnt and the lenses are then ruined. I also do not recommend polishing the lenses more than twice, as the lenses slowly lose their durability and can split in the process.
It is therefore imperative that you have a spare pair of lenses before offering your current lenses for polishing. Remember it can take up to ten days to manufacture another set of lenses, so having a spare pair is always a great insurance policy.
7. Keratoconus experts are far and few between
JK: Earlier I mentioned that the prevalence of keratoconus in the general population is only 1/2000. In a country the size of Australia there are therefore only about 10,000 people that have clinically significant keratoconus.
There are approximately 3,000 optometrists in Australia so if patients with keratoconus were evenly distributed every optometrist would only have three keratoconus patients to look after. No optometrist in the country could possibly develop any expertise in this area with so little practice.
The good news is that there are a number of highly-skilled optometrists around the country that look after many keratoconus patients. The bad news is that they are almost all in the capital cities of Australia, so if you live in a rural area there is a good chance you have to travel to get expert attention.
If you read this report and have or know someone with keratoconus that is having a difficult time, I invite you to contact me via email at: firstname.lastname@example.org. If it is too difficult to see me in at The Eye Practice in the Sydney CBD, I will direct you to your nearest keratoconus expert. With the appropriate care you will get an action plan into place quickly and efficiently. In no time at all you will wonder what all the trouble was about.