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Is Keratoconus Hereditary? A Mother’s Perspective

Tags: Keratoconus Education

By: Pamela Disanto

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.

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. 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 or miss out on important events in high school and college.

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

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