While the exact cause of keratoconus is unknown, some cases have a hereditary component and studies indicate that about 10% of keratoconus patients have affected relatives[1]. If there is a family history of the condition, parents should be proactive about monitoring their children’s eye health and noting warning signs, such as blurry vision, squinting, and rapidly changing prescription. If detected at a young age, there are treatment options that can effectively prevent the need for a corneal transplant later in their life.

The Starting Point
As a mother of three boys, one of my biggest concerns is their health. Throughout your children’s lives you try to give them the resources they need to be successful – whether that’s playing sports, excelling in the classroom, taking up a musical instrument or acting in the school play.

When my two oldest boys, Michael (age 23) and Angelo (age 20), started complaining of vision problems in 2016, I was in a strange position. I suspected right away what might be causing their issues, while at the same time, I feared that my family might face a tremendously difficult health situation ahead.

For years, I, myself, have been struggling with an eye condition called keratoconus, a degenerative, and sometimes hereditary, disease that causes bulging and thinning of the cornea. If left untreated, keratoconus can potentially lead to blindness, so it’s critical to properly manage the disease. After decades of contact lenses and “watchful waiting”, four years ago, I finally decided to undergo a corneal transplant – the only long-term treatment option available to me at the time.

The transplant removed my damaged corneal tissue and replaced it with healthy donor tissue, enabling me to see clearly again without contacts. The surgery provided me with much needed relief. However, now my sons were experiencing symptoms similar to those which I experienced several decades ago. Experts generally agree that keratoconus can be hereditary, suggesting that our family’s struggles with the disease had just begun.

My Sons’ Diagnosis
A visit with our doctor soon confirmed my fear; both Michael and Angelo had keratoconus. I was absolutely devastated, knowing that the cycle had essentially started over again. I feared for Angelo in particular, as he had trouble wearing regular contact lenses prior to his diagnosis. I worried that there would be no way for him to effectively manage the disease with specialty lenses or glasses– especially since both eyes were progressing rapidly. The memory of my corneal transplant was still fresh, as my recovery had been long and painful. In the end I needed a total of 32 stitches and was off my feet for weeks. I had heard that keratoconus could be hereditary, but I never thought it would affect us like this. I didn’t want my sons to put their lives on hold for this surgery or miss out on important events in high school and college.

It was at this low point, around a year ago, when our doctor called to say he had good news: there was now a minimally invasive FDA-approved procedure for progressive keratoconus called corneal cross-linking. Rather than replace any tissue, cross-linking strengthens the cornea and works to prevent any further deterioration.

While our insurance didn’t cover Angelo’s cross-linking procedure, my husband and I were determined to get him this treatment, convinced that you can’t put a price on your family’s health and happiness.

At All Costs
Angelo was the first to undergo the procedure in May of last year, ultimately electing to have both eyes treated on the same day.

Initially, the recovery was hard, simply because both of his eyes were sensitive and needed care, but he was soon able to return to normal activities. This knowledge was helpful for Michael, as we decided to have his eyes treated this past spring – the left eye in April and the right in early May.

Fortunately, our insurance covered the first of Michael’s procedures and we’re hopeful the second will be covered as well. Michael’s recovery was also much smoother and less painful compared to his brother’s, which we attribute to the decision to treat both eyes separately.

As of now, my youngest son shows no signs of keratoconus, but I know if he does, cross-linking may be an available treatment option. Without cross-linking, I truly don’t know what we would have done. I’m incredibly thankful that my boys didn’t have to go through what I did, and I’m confident that this condition won’t consume my children’s lives or their futures. Now that we know that for our family keratoconus is likely hereditary, my boys will know to keep a watchful eye on their future children and educate them on eye health, and I am thankful for that.

[1]Chang H.Y., Chodosh J. The genetics of keratoconus. Semin. Ophthalmol. 2013;28(5-6):275–280.

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