This blog will be a semi-technical look at an eye condition called Keratoconus - an eye condition that affects teens - where the cornea thins and bulges outward like a cone.
As someone that has this condition, I will be talking about my experiences of living with Keratoconus (KC) as well as discussing novel treatments and possibilities from recent research literature.
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My Experience
I was diagnosed with KC in the winter of 2013 in my freshman year of university. I actually had no idea that there was any issue with my eyes until I went to the DMV to get my driver's license. Just after the road test, they asked me to perform a quick eye exam since it had been a few years since I had gotten my learner's permit. Eager to get my license and leave so that I could show it off to family and friends, I quickly covered my left eye and rattled off every line with my right eye flawlessly. Switching over to my left eye, I began to read when I realized that I could barely see the first line.
Then again, this was the DMV and it had been hours - I was probably just sleepy and rubbing my eyes should help. However, rubbing, squinting, looking at the board sideways, nothing seemed to work. The lady told me that though I had passed the road test, I would not get my license until I had my eyes checked and was able to read at a 20/30 level. Leaving the DMV, I felt disappointed and a little confused - after all, I had 20/20 vision ever since childhood and even now I could see perfectly with both eyes open.
That weekend, I booked an appointment with my ophthalmologist. After creating a topographic map of my eyes, she informed me that I had Keratoconus. I learned that KC was a hereditary disease that can also be caused - and exacerbated - by constant eye rubbing and overexposure to UV rays. Though my family has no history of any eye conditions, the eye rubbing and UV resonated with me. Because of my allergies, I rubbed my eyes - a lot! Additionally, since I played tennis 3-4 hours a day, I was exposed to UV as well.
After looking at my corneal topography - an imaging technique for mapping the curvature of the cornea - I could easily see that my left cornea was far more oblique than the right.
My doctor told me that even though my right eye seemed fine, usually KC is usually more pronounced in one eye and that over time, both eyes would degrade. Since my cornea had a strange pointed shape, glasses and soft contact lenses would not work for me. At this time, there was no treatment available other than fitting me with a hard contact lens and hoping that it would be enough. Meanwhile, my vision would continue to deteriorate.
And deteriorate it did - from 20/80 at the start of university to 20/200 by the end of a year and a half. During our family's summer trip to India, my mom asked her sister (an ophthalmologist) for her opinion and she told us about a new experimental procedure called collagen cross-linking (CCL). She explained that CCL was not a surgery - it was a minimally invasive procedure that uses eye drops and UV bombardment in order to strengthen the cornea by bolstering the collagen fibers in the eye. UV radiation turns out to be key not only in causing KC, but also in obstructing it. Prolonged exposure to UV stiffens the cornea. This is the reason adults normally do not have this condition - their many years of exposure to UV from the sun has hardened the cornea. Though this procedure does not restore lost vision, it does prevent further degradation. She repeated that CCL was experimental and that there could be risks, but I was desperate to save my left eye and agreed to the procedure.
On the day of the procedure, the doctors periodically added anesthetic eye drops that slowed and eventually stopped movement of my left eye so that they could perform the procedure. They led me inside the operating room and I saw something like this.
I laid down on the operating bed and the doctors told me that they would have to restrain me. My wrists were held down by a cuff by the side of the table and some kind of eye-opening brace was placed on my left eye so that I could not close it. This was around the time I began to freak out. With the lights in the room dimmed other than the blinding light above me and my complete inability to move, the scene eerily reminded me of a torture rack. During the procedure, my doctor gave me vitamin B12 drops since these aid in photo enhancing - this enables a simpler cross-linking. The machine being used was called the Avedro KXL and administered UV light which allowed new cross-links to develop by shortening collagen fibrils. The procedure was only one hour long but felt much longer and I was thoroughly uncomfortable for every second of it (hence the restraining cuffs).
Though the doctors assured me before and during the procedure that I'd be completely fine afterward, I definitely was not. After the UV bombardment I had undergone, I had a terrible headache and my left eye still felt blinded and overwhelmed even though there was no more light. After three days I was back to normal but those few days were primarily spent laying in bed with the worst headache and burning pain I had experienced.
A few months later, this process was repeated for my right eye in the Turner Eye Institute in California. The experience was equally uncomfortable if not a little worse since my dominant eye was the one being operated on. If there is any improvement or better way of handling the patient post-op, I would definitely want to know and introduce it.
As someone that has this condition, I will be talking about my experiences of living with Keratoconus (KC) as well as discussing novel treatments and possibilities from recent research literature.
_________________________________________________________________________________
My Experience
I was diagnosed with KC in the winter of 2013 in my freshman year of university. I actually had no idea that there was any issue with my eyes until I went to the DMV to get my driver's license. Just after the road test, they asked me to perform a quick eye exam since it had been a few years since I had gotten my learner's permit. Eager to get my license and leave so that I could show it off to family and friends, I quickly covered my left eye and rattled off every line with my right eye flawlessly. Switching over to my left eye, I began to read when I realized that I could barely see the first line.
Then again, this was the DMV and it had been hours - I was probably just sleepy and rubbing my eyes should help. However, rubbing, squinting, looking at the board sideways, nothing seemed to work. The lady told me that though I had passed the road test, I would not get my license until I had my eyes checked and was able to read at a 20/30 level. Leaving the DMV, I felt disappointed and a little confused - after all, I had 20/20 vision ever since childhood and even now I could see perfectly with both eyes open.
That weekend, I booked an appointment with my ophthalmologist. After creating a topographic map of my eyes, she informed me that I had Keratoconus. I learned that KC was a hereditary disease that can also be caused - and exacerbated - by constant eye rubbing and overexposure to UV rays. Though my family has no history of any eye conditions, the eye rubbing and UV resonated with me. Because of my allergies, I rubbed my eyes - a lot! Additionally, since I played tennis 3-4 hours a day, I was exposed to UV as well.
After looking at my corneal topography - an imaging technique for mapping the curvature of the cornea - I could easily see that my left cornea was far more oblique than the right.
My doctor told me that even though my right eye seemed fine, usually KC is usually more pronounced in one eye and that over time, both eyes would degrade. Since my cornea had a strange pointed shape, glasses and soft contact lenses would not work for me. At this time, there was no treatment available other than fitting me with a hard contact lens and hoping that it would be enough. Meanwhile, my vision would continue to deteriorate.
And deteriorate it did - from 20/80 at the start of university to 20/200 by the end of a year and a half. During our family's summer trip to India, my mom asked her sister (an ophthalmologist) for her opinion and she told us about a new experimental procedure called collagen cross-linking (CCL). She explained that CCL was not a surgery - it was a minimally invasive procedure that uses eye drops and UV bombardment in order to strengthen the cornea by bolstering the collagen fibers in the eye. UV radiation turns out to be key not only in causing KC, but also in obstructing it. Prolonged exposure to UV stiffens the cornea. This is the reason adults normally do not have this condition - their many years of exposure to UV from the sun has hardened the cornea. Though this procedure does not restore lost vision, it does prevent further degradation. She repeated that CCL was experimental and that there could be risks, but I was desperate to save my left eye and agreed to the procedure.
On the day of the procedure, the doctors periodically added anesthetic eye drops that slowed and eventually stopped movement of my left eye so that they could perform the procedure. They led me inside the operating room and I saw something like this.
Though the doctors assured me before and during the procedure that I'd be completely fine afterward, I definitely was not. After the UV bombardment I had undergone, I had a terrible headache and my left eye still felt blinded and overwhelmed even though there was no more light. After three days I was back to normal but those few days were primarily spent laying in bed with the worst headache and burning pain I had experienced.
A few months later, this process was repeated for my right eye in the Turner Eye Institute in California. The experience was equally uncomfortable if not a little worse since my dominant eye was the one being operated on. If there is any improvement or better way of handling the patient post-op, I would definitely want to know and introduce it.
