KERATOCONUS FAQS
Answering Questions about Keratoconus
Learn how to respond to some of the most common questions asked by new keratoconus patients.
By Long D. Tran, OD, and Timothy B. Edrington, OD, MS, FAAO

Keratoconus (KC) is a condition that typically affects otherwise healthy people beginning in their second or third decade of life. This is usually the start of some of the patients' most active and productive years.

Most, if not all, patients have some level of anxiety the moment you first diagnose them with KC. These patients typically have numerous questions and concerns about how the condition may affect their work, their family and their life. However, because of apprehension or lack of opportunity, these fretful questions often go unasked. New keratoconic patients may often find themselves worried about the health of their eyes and uncertain about the future of their sight.

Common Themes

Over the years, we've encountered several recurring questions that KC patients and their families tend to ask. By addressing these questions beforehand, you can be more effective in educating KC patients and easing their concerns.

Following are some of the most frequently asked questions we've heard from keratoconus patients and how we address them.

"Will I go blind?" You need to reassure newly diagnosed patients that KC won't cause blindness, although their vision is likely to progressively worsen. However, with the use of GP contact lenses, most KC patients can maintain good functional vision and a normal lifestyle.

We also mention that although KC tends to progress through a patient's 20s and 30s, its progression usually stabilizes during the patient's early 40s. In the event that vision becomes unsatisfactory through their GP lenses or if they can no longer tolerate contact lens wear because of discomfort, a corneal transplant may be necessary.

"Can I get LASIK?" This is usually the second question that we encounter unless a laser center referred the patient. With frequent advertisements for LASIK, some patients are under the impression that laser surgery is a solution for all vision problems. You need to make sure patients understand that KC is a corneal thinning condition and that LASIK is a corneal thinning procedure. Surgically making a thin cornea thinner will probably only speed up the progression of KC and worsen the condition. You should also stress to these patients that even if they may find a surgeon who is willing to perform the procedure, LASIK is highly contraindicated for patients who have KC or who are KC suspects.

One surgical option that is available for mild-to-moderate KC patients is Intacs (Additions Technology, Inc.). You should discuss Intacs with your patients to see if it's the best option for their present and future vision needs.

"Will my kids have keratoconus, too?" With the World Wide Web so readily available, some of your patients will already know much about KC before even setting foot in your office. Some of the materials that they encounter suggest a genetic etiology for KC. Patients may question whether or not they should have children, and those who already have children may wonder if their kids will develop it, too.

You should inform these patient that although KC has a genetic predisposition, the literature reports that less than 25 percent of KC patients have a family member who has clinical KC. Some precautionary measures that parents can take are to warn their children against aggressive eye rubbing and to ensure that they receive regular eye examinations. You should encourage these patients to have as many children as they desire.

"Why can't I wear soft lenses?" This is typically the question that patients immediately ask when we tell them that they need to wear GP lenses to optimize their vision. We try to explain to our patients that while those who have early KC may attain adequate vision through soft lenses, most attain their best vision through GP lenses. Soft lenses are generally not able to adequately correct the irregularities of KC corneas and instead tend to contour to the hills and the valleys of the cornea. You can use the example of plastic wrap to help illustrate how a soft lens takes the shape of what's underneath, while GP lenses are able to mask many of the irregularities of the keratoconic cornea. Because a GP lens doesn't bend or fold like a soft lens, its front surface can act as the new optical surface for the eye. As a patient's condition worsens, the parameters of the GP lens need to change accordingly. You need to help patients understand that frequent follow-up care is necessary for you to identify these changes, as well as to monitor the health of the cornea.

"Will I need a corneal transplant?" Patients who surfed the Web before coming to your office will often ask this question. You need to reassure patients that only about 10 percent to 20 percent of KC patients ever require a corneal transplant procedure. Generally, KC patients are referred for a penetrating keratoplasty (PK) if they meet one of two criteria:

1. Unacceptable vision through the best-fitting GP lens.

2. Inability to comfortably wear lenses.

Most patients successfully wear GP lenses and can maintain surprisingly good vision, even with moderate corneal scarring.

Helping Patients Cope

You become more than a contact lens prescriber when you diagnose KC. You become an advisor and a supporter. Because of the lifestyle changes that KC demands, patients may easily become overwhelmed. You should explain the general characteristics and etiology of the condition to KC patients to dispel myths that patients may have obtained from erroneous sources.

You can also recommend other sources that will help them learn about and manage their condition. Resources such as The National Keratoconus Foundation (www.nkcf.org) provide information on KC. Patients and their families may also find online support groups helpful. Table 1 lists some of these resources. By properly educating KC patients about their condition, you can help them better cope.