corneal abrasionIf you’ve had a corneal abrasion, you know how painful it is.  If left untreated, a corneal abrasion can cause permanent scarring, impaired vision and even blindness.  In people with Familial Dysautonomia, pain sensation is absent, which, at first blush, seems like a godsend. However, pain is really a positive because it acts as a siren, alerting our body that something needs attention.

So, what happens when someone with FD gets a corneal abrasion and those pain sirens are incapable of blaring?  How do you seek treatment if you aren’t even aware you are having a medical emergency? You get lucky, like our son Andrew did, when he got a corneal abrasion.

One night, Andrew said that his vision in his left eye was blurry.  We looked in his eye, but nothing seemed unusual.  The next day, Andrew went to the optometrist to test his vision.  The nurse asked, “How does your eye feel?”  Andrew said, “I have Familial Dysautonomia so I cannot feel pain.”  When Andrew was asked to cover his right eye and read the eye chart, he saw nothing.  A giant “W” appeared on the wall, as big as the size of my head.  Yet, Andrew saw nothing.  I looked at the visual acuity number next to the giant “W” and it read 20/600.  (For reference, 20/20 is great vision, and 20/200 is legally blind.  Andrew’s baseline is 20/60, but on this day, he could not even see 20/600, far worse than what is considered legally blind!)

The optometrist, disbelieving the vision test, retested Andrew’s eyes, which yielded the same result.  When the optometrist looked in Andrew’s eye, he was alarmed. There, smack dab in the center of his cornea, was a huge 3mm x 4mm abrasion, shaped like a rectangle.  Andrew guessed, based on the shape, that he had inadvertently stabbed himself with one of the arm tips of his eyeglasses while putting them on.  The doctor was flabbergasted, “I’m AMAZED that you cannot feel that! I’m arranging for you to go see an ophthalmologist RIGHT NOW.  The danger is that if it scars, you will have permanent vision loss.”

From that point forward, Andrew had ten ophthalmologist appointments in three weeks, as the doctors tried various treatments.  After two unsuccessful antibiotics a third antibiotic finally helped Andrew slowly turn the corner towards healing.

Thankfully, many months later, Andrew’s corneal abrasion has fully healed! With the help of Xiidra, a prescription eye lubricant, Andrew’s vision is restored to his 20/60 baseline. What a relief that this abrasion was caught in time and did not cause permanent scarring!  Of course, without pain sensors, Andrew always remains at risk for an undetected abrasion, so we remain vigilant in monitoring his eye health.  To learn more about the symptoms of Familial Dysautonomia, click here


Ann Slaw, JD
President, FD NOW
Parent to young adult with Familial Dysautonomia