People react differently to the news that they have keratoconus (KC). Lack of knowledge often creates fear, so learn all that you can about this condition. Ask questions and discuss your concerns with your doctor and others who have keratoconus. This will be both enlightening and reassuring.

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.

• 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 and to talk freely about it with family and friends to be sure that they understand it.

• Perhaps there is no better therapy than sharing your experiences with others in similar circumstances. If at all possible, talk with other keratoconus patients. The mutual sharing of common experiences is both rewarding and reassuring.  For information about support groups in your area, contact us.

• Online, you can connect via KC-Link. This is a free interactive email based forum offering those with keratoconus a unique opportunity to share their experiences, concerns and stories with others who can truly understand the daily frustrations of this condition. The camaraderie shared and support offered is invaluable. For more information go to: KC-Link

Financial Burden of Keratoconus

To estimate the financial burden of keratoconus, researchers from Washington University in St. Louis and Ohio State University modeled a hypothetical cohort of patients on the findings of the Collaborative Longitudinal Evaluation of Keratoconus (CLEK) study to develop a range of costs, including clinic visits, fitting fees, contact lenses, surgical procedures and possible complications. They determined a patient could be expected to pay more than $25,000 over his or her lifetime post-diagnosis, with a standard deviation of $19,396 (source).

Cost of care involves contact lenses, surgical interventions if needed like Intacs or corneal transplant.

A large portion of the lifetime cost of keratoconus care is for the specially designed contact lenses that are required to correct the distorted vision caused by keratoconus. These lenses are more costly than contact lenses for routine vision correction, so expect to pay more when you visit an eye care practitioner who specializes in keratoconus contact lens fitting. You’re paying for the time involved in the fitting process, the practitioner’s special expertise, the equipment required to measure and determine the lens fit and the advanced type of lenses you’ll receive. Fees of several hundred dollars for specialty lens fitting is not unusual and these fitting fees often do not include the cost of your lenses.