Coping With Keratoconus

What is the future of patients with this problem?

Keratoconus does not lead to blindness.

It is amazing that most patients with keratoconus managed by us believe that they will go blind sometime in their life. This occurs simply because they have seen their vision get worse and worse so they believe 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 multiple options before corneal Transplantation may be required. Even for cornea transplantation the success rates are in excess of 95% in good hands.

How rapidly will the problem progress?

When diagnosed in the early stages, KC may be corrected with glasses which may require frequent changes in the astigmatism prescription. The continued thinning of the cornea usually progresses slowly for 5 to 10 years and then tends to stop. Occasionally, it is rapidly progressive. Both you and your eye care specialist would like to know how your case is going to behave. However, the rate of progression for a particular patient is impossible to predict. Some patients advance rapidly for six months to a year and then stop progressing, with no further change. Often there are periods of several months with significant changes followed by months or years of no change; this may then be followed by another period of rapid change. In the CLEK Study (one of the largest studies on keratoconus in the world with more than a thousand patients studied for more than 7 years), the slope of the change of flat K was approximately 0.20 D diopters per year; over seven years; this translated into an expected steepening of 1.44 D. Steepening of 3 D or more in either eye had an incidence of 23%.

In the advanced stage, the patient may experience a sudden clouding of vision in one eye that clears over a period of weeks or months. This is called “acute hydrops” and is due to the sudden infusion of fluid into the stretched cornea. In advanced cases, superficial scars form at the apex of the corneal bulge resulting in more vision impairment. We can thus say that the course of the  disorder can be quite variable, with some patients remaining stable for years or indefinitely, while others progress rapidly or experience occasional exacerbations over a long and otherwise steady course.

Most commonly, keratoconus progresses for a period of ten to twenty years, before the course of the disease generally ceases.

How do other people with this problem manage?

In my practice over the years, I have found that people react differently to the news that they have KC. Lack of knowledge often creates fear, so I encourage all individuals to learn all that they can about this condition. It is a good idea to ask questions and discuss your concerns with your doctor and others who have keratoconus. This will be both enlightening and reassuring.

From a medical standpoint, the most important thing you can do is to keep in touch with your eye care practitioner and follow his/her instructions. From an emotional and psychological standpoint, it is important to understand the nature of keratoconus. Do not try to hide the problem. Talking freely about it with family and friends helps them to be sure that they understand it. We at Clear Vision Eye Center, usually suggest that a family member accompany the subject during initial discussions. If at all possible, talk with other keratoconus patients. The mutual sharing of common experiences is both rewarding and reassuring. If you need any help with this please contact your practitioner. Usually practices who deal with keratoconus regularly will be able to help you find another person with this problem.

Help groups are internationally known to be a good support. However, we at Keratoconus Center of the Clear Vision Eye Center are in the process of encouraging the first such support group soon in Mumbai. For further details visit www.clearvision.org.in.
Over the years, we have had many subjects who have gone on to be successful in their chosen fields despite this disorder. This proves that KC should not stop you from accomplishing your goals. People from all walks of life have experienced this disorder, including many individuals in the entertainment industry, medicine, sports and business.

It has been our observation that patients who handle their KC problems successfully develop their own coping mechanisms. These include wearing sunglasses for driving, carrying extra contact lenses, and planning ahead for local trips.

While it is important that you accept keratoconus as a fact in your life and realize that you have to adapt to it, it is essential for you to understand that adapting is not surrendering. You control your life, keratoconus does not.

How have others before me coped with this problem?

Tips to cope with this problem are many, some that I use in my practice in Mumbai are:

Reducing eye rubbing is vital

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 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 felt that rubbing eyes that are predisposed to keratoconus traumatizes the cornea causing it to thin and become distorted in shape. As discussed before, this distortion in shape then causes 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.

Over the years three strategies have worked well for our patients:

  1. Because allergies contribute significantly to the urge to rub, it is a
    good idea to use anti-allergy drops, especially in allergy season.
  2. Cold compresses should be used when you feel like you need to rub. The most convenient form of cold compresses is to purchase a cold pack from the chemist (which is a blue gel in a plastic bag), freeze it and have it ready. When you need to use it wrap it once in a tea towel and then mould it into your eye sockets. You will find relief very quickly this way. Simply using a towel dipped in ice water is equally useful!
  3. If you are wearing contact lenses, the solutions that they are stored in are loaded with preservatives which can cause itchiness. Rinsing the lenses with preservative free lubricating drops before inserting them into your eyes will contribute to rubbing your eyes less.

Decreasing eye rubbing cannot be overstated. Stop rubbing your eyes now!

Maintain a meticulous documentation of your case.

The most important part of keratoconus management is to assess if the problem is stable or progressive in nature. As mentioned earlier keratoconus does not progress indefinitely. However, this calls for proper and periodical maintenance of your records to see how things are progressing. Always ask your practitioner for your set of records. It is your right. This is crucial to decide the kind of management that a given eye is likely to need. For example a relatively stable eye can continue with contact lenses almost indefinitely, a progressive keratoconus eye may need different management. The idea is preventing your eye from becoming “advanced keratoconus”.

Tips for Selecting Sunglasses :

Many KC patients find that wrap-around styles tend to work best from the standpoint of comfort, as they not only filter sunlight from directly ahead but also from the sides. Another benefit to wraparound glasses is that they also tend to help block the wind, making contact lens wear more comfortable outdoors.

Polarized sunglasses tend to work best in reducing glare, which often helps significantly improve vision.

Consider buying more than one pair so that a backup is available in the event that you misplace your favorite pair. Many KC patients purchase several lower priced sunglasses to keep at home, work, and other places they might be needed.

Managing reading and Close-Up Vision?

Keratoconus generally results in a high degree of astigmatism that must be corrected in order to have adequate distance vision. The problem is that when distance vision is corrected, close-up vision often suffers, making it difficult to read with a high astigmatism contact lens prescription. An eye doctor or contact lens fitter will assess close-up vision to determine the proper magnification needed for reading glasses.

Tips for Selecting Reading Glasses

Reading glasses containing an antireflective coating are often helpful, especially in situations where a rear light source is present, which may reflect off of regular reading glasses.

  • If you tend to use a computer during part of the day, you should consider reading glasses that have been designed for computer use. Reading glasses designed for computer use are generally adjusted to be most effective at the distance that most people maintain from a computer screen.
  • Don’t settle for the least expensive reading glasses solely based on price. Higher quality glasses are generally more expensive but can provide much greater comfort and make reading for extended periods much easier. Higher quality reading glasses will have features such as anti-reflective coatings, better optical clarity, thinner lenses, and spring hinge frames.
  • Consider purchasing multiple pairs of reading glasses and keeping them in multiple locations like your car, home, office, etc.