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Seeing Clearly

Helping my son overcome a rare eye disease

Diehl Family 

Growing up, my son Charlie was everything you could ask for in a kid: he was smart, funny, and liked to play sports and spend time outside with his little brother.

Like most parents, we were nervous yet excited to send Charlie off to kindergarten. At a young age, he was ready to explore the world outside our house and meet other kids, so we were eager for him to experience school and its challenges. Some kids need another year to grow into themselves and learn to behave, but Charlie seemed perfectly suited for school and we had no reservations about how he would adjust to being in a classroom setting.

That is why it was very confusing to hear his teachers say that Charlie had a behavioral problem– in particular, he struggled with paying attention during class. They told us Charlie was easily distracted and needed to be placed at the front of the classroom. When we asked Charlie what was going on, he complained about not being able to see the chalkboard.

A visit to the eye doctor revealed that Charlie had astigmatism and near-sightedness. He was only five at the time, but we soon had him fitted for glasses and contact lenses, hoping they might be the solution. However, Charlie didn’t like wearing the glasses, and his teachers said that he would put them down on his desk during lessons.

We kept asking him, “Charlie, why aren’t you using your glasses?”

He always answered, “Because they aren’t helping me.”

The teachers then suggested that Charlie might have Attention Deficit Disorder (ADD), which would explain his inability to pay attention. However, the doctors we consulted didn’t think this was an issue, leaving us stumped. 

As a parent of a young child, it can be difficult to discern when they are being stubborn from when they are actually experiencing problems. You want to believe them, but when Charlie kept saying that treatment after treatment didn’t work, and his doctor was saying otherwise, we struggled with what to do. At the time, we knew that Charlie’s vision was giving him issues, but it wasn’t until much later that the extent of these problems would become apparent.

Working Through the Pain

While Charlie’s vision continued to bother him, he eventually settled down in the classroom and learned to adapt to his unfortunate circumstances. It wasn’t optimal, but he was able to succeed in school and sports by trying different methods for “controlling” his vision, including squinting during lacrosse to see the ball and holding his phone close to his face to text.

As a mom, this was far from the ideal life I envisioned for my son. All throughout middle and high school, I continued to take Charlie to eye exams, hoping the doctor might notice a new symptom or sign that would lead us to an answer or proper diagnosis. Most of the time, however, we were left feeling exasperated when the doctor prescribed new glasses or lenses that ultimately didn’t do much to help Charlie’s case.

In 2015, my husband and I made it our mission to find a specialist who might be able to tell us what was wrong. Eventually, we had a consultation with a contact lens expert, who did another examination of Charlie’s eye and listened patiently as we explained our story.

This conversation would be the first time we heard the word keratoconus.

Most people have never heard of keratoconus since it is a relatively rare condition, occurring in around 1 out of 2,000 people. No one knows what causes the condition, beyond it possibly being hereditary. With keratoconus, the corneas warp or distort, which in turn causes vision problems and–if not properly managed–possible blindness.

The doctor explained that the visual symptoms associated with keratoconus like glare, starbursts, and double vision are rarely correctable with glasses and contact lenses. Hearing the doctor talk about keratoconus was a real epiphany for me. It suddenly made sense why my son had struggled for so many years and why none of the corrective actions we had tried had worked.

A quick exam revealed Charlie had a severely advanced case of progressive keratoconus, so much so that it was causing his left eye to quickly worsen to levels where contacts and glasses would make little difference. I knew that we had to do whatever was necessary to help preserve his vision and give him a chance for a better life.

Finding a Solution

As a family, we had to make a decision. Thankfully, we were connected with a cornea specialist who had experience with keratoconus patients.

Our doctor not only explained all of our options for managing the condition but also helped us understand that without treatment, Charlie’s vision would likely worsen and he would have to have a corneal transplant by his late 20s. But there was hope; he told us about a new (in 2016) option: an FDA-approved procedure called corneal cross-linking that would strengthen the bonds in Charlie’s corneas and limit the progression of the disease.

As a family, we weighed the risks and benefits of the procedure and quickly came to the conclusion that Charlie should move forward with cross-linking. Charlie had his first cross-linking procedure during the spring of 2017 before his senior year of high school, and the second in the fall. Initial follow-up visits post-procedure confirmed the treatment had worked – Charlie’s keratoconus had stopped progressing

Now Charlie is heading to Ohio State for his freshman year of college, and we couldn’t be more excited. This past year, his confidence has grown substantially, and he is now living as a carefree teenager and not worrying about his vision worsening.

Only a year ago we had to talk to our son about his chances of going blind, now it is the furthest thing from our mind. Looking back, it is difficult not to wonder how much different Charlie’s life would have been if we had discovered his condition earlier, but now we are focused on the future and his new life as a college student.

Luckily, there are keratoconus resources available, such as the Living with Keratoconus community and the National Keratoconus Foundation, which can provide families, just like ours, with the information needed on the condition and treatment options.

If there is one takeaway from my family’s journey it would be this: If your child complains about a health problem – eyes or not – listen and keep working to get help. It took thirteen years, but we finally were able to find the answer for our son to help him live a normal life.

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