People react differently to the news that they have keratoconus. 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.
Take the Living with Keratoconus Survey
This survey is being conducted by Dr. Elio Spinello, Dr. Bezalel Schendowich, and the National Keratoconus Foundation. The research will add to the limited literature we have about how keratoconus patients are affected by the condition, as well as how they interact with their eye care providers and acquire health information. We are hopeful that this information will be of assistance to eye care providers and researchers.
Click to TAKE THE SURVEY
For this study, we are asking participants to anonymously complete a questionnaire about the sources of information they rely upon, recommendations they have received from eye care providers, effects of keratoconus on their lifestyles, and some background questions. All information gathered in the study will be collected anonymously, meaning that no names, email addresses, or other personal identifiers will be collected or associated with responses. No one will have the ability to determine the identities of survey respondents. Some or all of the data may be used for analysis and/or publication in aggregate form. No one other than the researchers will have access to raw data.
While there are no direct benefits of participating in this study, the cumulative results will help us gain a better understanding of factors that contribute to most effectively provide patient education to individuals with keratoconus.
If you wish to voice a question or concern about the research email: email@example.com
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. New text to replace existing paragraph that only mentions KC-Link.
- Online, you can connect via KC-Link or the NKCF Forum. These are free interactive forums 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.
KC-Link is email based and the Forum is a web-based bulletin board.
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.
Read personal stories of people living with KC.