Growing up, my son Charlie was smart, funny, and liked to play sports and spend time outdoors. However, Charlie began complaining of vision issues in his early childhood. When we took him to an eye doctor, we were told he was nearsighted and had an astigmatism– which the doctor said would be easily corrected with prescription glasses.
We tried the glasses, but Charlie continued to tell us that he was having trouble seeing the chalkboard at school. He was only six, but kept telling me, “Mom, this isn’t working,” so we had to keep getting him new prescriptions. It took years and countless appointments, but nothing seemed to truly fix his vision problems.
Beyond Charlie’s issues with his eyesight, his teachers also told us he had difficulty focusing during class, and they had to move him to the front of the room to help him pay attention. Many teachers suggested that we have him evaluated for attention deficit disorder (ADD), but his doctors determined he did not have the disorder.
Eventually, Charlie learned to cope with his vision issues– he squinted when playing lacrosse to see the ball better and held his phone very close to his face to see the screen. Despite his struggles, he remained a good student and athlete all throughout middle and high school.
Finding Relief in a Diagnosis
While Charlie had adapted to his less-than-stellar vision, there was always a sense that we should be doing more to help him. As he got older, he was able to articulate that he could not see clearly and his eyes were particularly sensitive– but we did not know what (if anything) we could do to fix this.
In 2015, when Charlie was a sophomore in high school, we decided to visit a contact lens specialist who suggested that Charlie’s unusual symptoms meant he might have keratoconus, a progressive condition that causes deteriorating vision and in severe cases, blindness. A follow up visit confirmed this diagnosis, and the specialist told us that Charlie had an advanced case of keratoconus and his left eye had progressed more than his right.
Hearing the doctor talk about keratoconus was a real epiphany for me. It suddenly made sense why he had struggled in school and in sports for so many years and why none of the previous vision correction attempts were successful. It really validated what Charlie had been saying, and I knew that we had to do whatever was necessary to help preserve his vision and give him a chance for a better life.
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; our doctor told us about an FDA-approved procedure called corneal cross-linking that would strengthen the bonds in Charlie’s corneas and may limit the progression of the disease.
We initially had concerns about the procedure, as we would with any potential treatment. We researched it thoroughly and had many discussions with Charlie about the risks and benefits– ultimately deciding it was worth it for his peace of mind. After finally securing a correct diagnosis, we were relieved to find the right treatment option for Charlie to help preserve his vision for the future.
Charlie had his first epi-off cross-linking treatment in April of 2017 and the second one a few months later in September, both of which he recovered from fairly quickly. Charlie’s experience was not typical, however, as many patients experience some level of pain or blurred vision following the cross-linking procedure.
Off to College
Today, Charlie is 18 and has just packed his bags to go off to college in a few weeks. Since undergoing cross-linking we have seen Charlie’s confidence and independence transform. His senior year of high school was one of his best, which we attribute to a better understanding of his vision problems and the assurance that his keratoconus has been properly treated.
A year ago, we were discussing the likelihood of Charlie needing a corneal transplant in his late twenties– an expensive and invasive procedure that would likely need to be repeated later in life as well. Now post cross-linking, he is more comfortable when he drives and enjoys life as a carefree college student. In the past when we visited the eye doctor we would only receive bad news, but lately we have had increasingly positive results.
Thinking back on the early signs of his keratoconus– for example, Charlie not wanting to wear his glasses because they did not help him– it is now apparent that his declining vision was a larger issue than we had ever expected. We had never explored how dominant a role these vision challenges were playing in his day-to-day life. Thankfully, it seems we were finally able to find the right solution for our son.
Charlie is a bright, happy kid with a great future ahead of him, and while we are happy and nervous about him going off to college, we now know that his vision struggles are under control, which is all I could ever ask for.