Many of us have experienced vision troubles at some point in our lives. While these issues – such as blurry or distorted vision – may just mean that you need glasses, they could also be a sign that you have a rare eye disease called keratoconus. Keratoconus is a progressive condition that can worsen over time, so early diagnosis and treatment are critical to preserving vision. It’s important to be your own advocate or your child’s advocate. If you believe vision is becoming an issue, look for potential warning signs and schedule an eye exam.

It is not uncommon for someone with keratoconus to be misdiagnosed or even to have their keratoconus go undiagnosed, as we have seen in the Living with KC community. Following an eye exam, many people are given contacts or glasses to help address the vision aspect of keratoconus. Unfortunately, many of the symptoms of keratoconus are characteristic of other eye problems and could lead your eye doctor to believe you have another, more common, eye issue. For someone with keratoconus, not only is a misdiagnosis frustrating, but without early detection and proper treatment, the condition could progress and result in significant visual loss. 

Mistaken Signs and Symptoms

Teenagers or adults who are living with keratoconus are often misdiagnosed based on their symptoms. For example, experiencing blurred vision, light sensitivity, and headaches could lead your doctor to believe you have astigmatism, myopia, ADHD, migraines, or that you might just need new glasses or contacts. However, those signs may also indicate that you have a progressive eye condition. At times it is difficult to understand the difference, so to help you gain more knowledge, here is a list of signs and symptoms that arise in people living with progressive keratoconus:

  • Blurring or distorted vision, making it difficult to see clearly
  • Increased sensitivity to light, which can cause problems while driving at night 
  • Eye redness or swelling
  • Changes in the shape of the eye
  • Frequent changes in eyeglass prescriptions
  • Halos and ghosting
  • Excessive eye rubbing 
  • Eye irritation 
  • Headaches 

Keratoconus may change over time as the disease progresses, and someone who has early-stage keratoconus may experience completely different symptoms than someone who has been living with keratoconus for years. It is important to consider all options with your physician before landing on a diagnosis. It may even be time for a second opinion if you feel that something more serious might be going on with your eye health. 

A Firsthand Experience With Misdiagnosed Keratoconus

Sherri, a member of the Living with KC community, knows firsthand what it’s like to have her son be misdiagnosed for years. ​​When Charlie began complaining of vision issues during his early childhood, Sherri took him to an eye doctor who said he was nearsighted and had astigmatism. The doctor said this would be easily corrected with prescription glasses, but Charlie continued to have trouble seeing the chalkboard at school. After years of countless appointments and changing prescriptions, nothing seemed to truly fix his vision problems. Beyond Charlie’s issues with his eyesight, his teachers told Sherri and her husband that Charlie had difficulty focusing and paying attention during class. Many teachers suggested that he be evaluated for attention deficit disorder (ADD), but his doctors determined he did not have the disorder. When Charlie was a sophomore in high school, the family decided to visit a contact lens specialist who suggested Charlie’s unusual symptoms could be keratoconus – and soon after a follow-up visit confirmed this diagnosis. 

Hearing the doctor talk about keratoconus was a real epiphany for Sherri. It suddenly made sense why Charlie had struggled in school and sports for so many years and why none of the previous vision correction attempts were successful. It validated what Charlie had been saying, and Sherri knew they had to do whatever was necessary to help preserve his vision. Without treatment, Charlie’s vision would likely worsen, and he would need to have a corneal transplant by his late 20s. But there was hope because their doctor told the family about the iLink® FDA- approved crosslinking procedure, which is meant to slow or halt the progression of keratoconus to help preserve vision. After finally securing a correct diagnosis, the family was relieved to find the right treatment option for Charlie to help preserve his vision for the future.

Thinking back on the early signs of his keratoconus – for example, Charlie not wanting to wear his glasses because they did not help him –Sherri now recognizes that his declining vision was a larger issue. You can read more about Sherri’s experiences here.

Early Diagnosis & Treatment of Keratoconus Is Crucial

Catching keratoconus in its early stages is extremely important. If not diagnosed correctly and properly treated, people will face more concerns from not knowing why their vision is worsening. Their keratoconus will most likely continue to progress, resulting in further vision loss. Whether you are feeling worried, relieved, or a little bit of both, a proper diagnosis gives people the chance to start taking control of their lives again. 

Early detection and treatment are key to managing progressive keratoconus. Having more knowledge about your condition gives you the power and opportunity to take control of your eye health with treatments such as the iLink® FDA- approved cross-linking procedure.  

Here’s What You Can Do

If you think you or a loved one may have progressive keratoconus make an appointment with your eye doctor for proper testing. Your family may be at higher risk since keratoconus is a genetic condition, so check in with relatives to see if anyone was previously diagnosed with the condition. It can be difficult to diagnose a child with keratoconus, as they may have a hard time vocalizing or explaining when they cannot see something, but there are signs you can watch out for. You can also check with your child’s school to see if they are doing vision exams. To take it a step further, ask their teachers if they have seen your child squint at the board or if they have any difficulties reading and completing tasks.

As for yourself, keep up with your eye exams and monitor for any vision issues, including light sensitivity, eye rubbing, or headaches, you may experience. If you have questions or concerns, don’t hesitate to contact your eye doctor. For more information on keratoconus and available treatment options, visit our website and follow Living with KC on Facebook, Twitter, and Instagram

If you have questions about what you can and can’t do with your condition, it’s best to discuss them with your doctor. For more information on keratoconus, and to hear from others, visit our website and follow Living with KC on Facebook, Twitter, and Instagram.