Scared, worried, and confused are just a few of the emotions that people use when describing how they felt after a keratoconus diagnosis. Long-term illnesses can have a big impact on the daily lives of patients, as well as their families and caregivers, so it’s understandable that the unknown can feel scary.

On the flip side, many people in the keratoconus community express their relief in finally having a diagnosis for what they have been experiencing. Early keratoconus symptoms, such as blurry vision and increased sensitivity to light, can often be mistaken for common eye issues. This can delay proper diagnosis and treatment, causing patients more fear from having an “unknown” condition.

Whether feeling scared, relieved, or a little bit of both, a proper diagnosis gives patients the chance to start taking control of their lives again. They can address the physical side effects of keratoconus by understanding the disease and their treatment options and start figuring out how to live their best life.

If you or a family member have been recently diagnosed with keratoconus, here are some suggestions for coping with the condition.

Knowledge is Power

Learn as much as you can about keratoconus. Knowledge is power and will prepare you to ask the right questions and even make important decisions regarding your care. Information provided by a keratoconus specialist or additional keratoconus resources are excellent first steps in understanding the condition and your potential treatment options.

We also suggest using the National Keratoconus Foundation website as a resource. As an organization, they are dedicated to increasing the awareness and understanding of keratoconus and the support of scientific research into the cause and treatment of keratoconus.

Find Your Community

Many people have never heard of keratoconus before their diagnosis and are comforted when they learn the keratoconus community is full of supportive people and helpful resources.

The National Keratoconus Foundation hosts day-long learning events across the country to better educate and connect the KC community. Earlier this year at one of these events, Deborah, who was diagnosed nearly 40 years ago, shared how important it was for her to finally meet other people that could understand her struggle.

The Keratoconus Group, KC-Link Forum and Keratoconus on Reddit are just a few of the online groups and forums that patients can seek out for information about their diagnosis and build relationships with members of the keratoconus community.

Pursue What You Love

Continue to pursue your passions in life, whether as a high school student interested in the performing arts, serving your community as a firefighter or excelling as a professional athlete.

Others have been inspired by their keratoconus diagnosis to pursue a career in medicine, including the field of ophthalmology.

A keratoconus diagnosis does not mean you have to stop doing the things in life that bring you joy.

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