Keratoconus awareness is hugely important as the diagnosis can be scary and leave someone with more questions than answers. For anyone who is living with a chronic condition or who has received an unexpected diagnosis recently, the feelings of uncertainty can have an impact on their ability to remain confident in their lives. We have connected with many people living with keratoconus and their families over the past few years who have shared how confused and overwhelmed they (or their loved ones) felt when they were diagnosed with the condition. They quickly became concerned about how their condition would affect their future.
Will the condition prevent me from socializing with my family and friends? Will I have to stop playing sports or participating in extracurricular activities? Will I need to stop doing the things that I love?
Over the last few years, awareness of keratoconus has increased, and patients are able to remain confident in their lives knowing that their keratoconus can be treated appropriately. More people are being diagnosed with keratoconus in the early stages of the disease, and there are FDA approved treatment options available, such as corneal cross-linking for progressive keratoconus and specialty lenses. Now, people are able to take advantage of appropriate treatment options faster – helping to preserve vision and allowing them to continue doing what they love.
To learn more, we recently sat down with some of our keratoconus experts to hear how keratoconus awareness has changed over the years and the importance of an early and accurate diagnosis.
Why is an early keratoconus diagnosis important for a patient’s short and long-term eye health?
Dr. John Berdahl, Vance Thompson Vision: Keratoconus is a progressive eye disease that typically affects both eyes and causes bulging to the front surface of the eye, called the cornea. Diagnosing keratoconus at an early stage is crucial to prevent permanent vision loss, slow the progression of the disease, and ensure the best visual outcome for each patient. Many options remain open to patients if progression is caught early.
How has keratoconus awareness changed in the last five years?
Dr. Jack Parker, Parker Cornea: With significant developments in the diagnosis and treatment of keratoconus in the past few years, we are on red alert looking for patients with keratoconus. This is a total reversal from our previous priority, which was almost a concerted effort NOT to find the disease, because there was no effective treatment. Now that the disease can be effectively slowed or halted, word is spreading rapidly about the importance of screening evaluations and early referrals to corneal specialists for treatment.
Are patients finding it easier to get an early and accurate diagnosis with KC?
Dr. Ken Beckman, Comprehensive EyeCare of Central Ohio: I believe it is getting easier, but we still need to educate the gatekeepers (optometrists and general ophthalmologists). Many optometrists and general ophthalmologists do not have access to topography, so early cases may be missed. Also, because there was no therapeutic treatment in the past, these practitioners may not be used to looking for signs of KC in the early stages. I believe the awareness has improved now that there is an FDA approved cross-linking treatment that is widely covered by insurance (Avedro’s), and more patients are being identified earlier.
For everyone on a journey with keratoconus – whether they are recently diagnosed or have been living with the condition for years – we want to share how they are living their lives as confidently as they can. We recently asked the Living with KC community when they feel most confident about their future with keratoconus.
- “When I think of all the things that I have accomplished in the past 4 years”
- “When I have my contacts on and I can see!”
- “When my eyes aren’t red”
- “When wearing my lenses:)”
- “When I don’t have to do anything involving my eyes or contact lenses at all.”
“I am extremely grateful to have had the opportunity to continue my education on time and being able to look towards my future without fear.” – Gage
I’m so glad that for the next generations of keratoconus patients, including my son, there are early diagnosis and treatment options available to manage the condition, slow or halt the progression, and protect one’s vision.” – Robin
“It’s exciting for me to be back in action with my group fitness classes and fully enjoy my time in them again.” – Adam
“It is important to know that keratoconus doesn’t mean you must stop doing what you love, including playing sports, even if it takes you a while to get there.” – Stephen
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Drs. John Berdahl, Jack Parker and Ken Beckman are paid consultants of Avedro.