Keratoconus: A Simple Way To Cope

One day your vision is nearly 20/20. The next week your eyes struggle to see correctly. Keratoconus usually begins during teenage years through almost two decades. No worries. The eyes do not go blind from the condition. Rather, the cornea’s start to gradually take the shape of cones or the tips of footballs, which causes distortion. This process is due to “sagging” of the tissues. And, the cornea’s begin to thin. Your eyes should naturally look like “domes” or “circular.” According to The Global Keratoconus Foundation, “the condition occurs in 50 to 230 per 100,000 population,” and will create vision loss in two ways:

l. From distortion of the cornea: Seeing through a misshapen cornea is like taking pictures with a camera whose lens has an irregular (not smooth) surface. Parts of the picture or field of vision are in focus and parts are out of focus. This visual problem is called irregular astigmatism.

2. From scarring or swelling of the cornea: Seeing through a scarred or swollen cornea is like taking pictures with a camera with a dirty or cloudy lens. The image or vision is blurred.

Doctors cannot tell if Keratoconus is hereditary. However, they mostly connect it to family members who deal with severe astigmatisms. It is detected early by a lessened vision and the inability to see things from a distance, also known as nearsightedness.

How My Life Changed
Before the age of 17, I maintained 20/20 vision in both eyes. At 21, my optometrist mentioned how I entered the early stages of Keratoconus. What did I know at that time? I knew enough to ask,

“Doc? Is this anything to worry about now?”
“Not necessarily. But, you should monitor it closely, from this point forward. For now, we can treat it with a hard, glass-type contact lens,” the Dr. responded.

I cannot tell you I followed these instructions. I didn’t have to. Each Drs’ visit revealed how the condition grew worse, which increased my eyeglass prescription every two years. The condition will cause a lot squinting. It created a lot of trouble for me. People thought I looked at them mean or with disgust per se. No one believed my vision was growing progressively worse. At night, the street lights appeared ghostly with a halo. Street signs and people walking looked as if there are two or three of them.

One evening, I sat home watching television. During a commercial, I went into the bathroom. When I turned on the lights, a burst of webs and sparkles hit both eyes. Within seconds, my eyes became sensitive to the lights. This experience constrained me to wear sunglasses for three months. I immediately went to the eye doctor. It got bad enough to move up to an ophthalmologist, who officially diagnosed me with the eye disorder: Keratoconus.

He highly recommended a surgical procedure called Corneal Crosslinking or CXL. It is a commonly practiced method in Europe making its way to become official in the US. Currently, ophthalmologists are using the procedure as a study to prove that it can help patients with this disorder. I was a part of the survey. Signing many forms and waivers, I became a statistic to help someone else and add to their vision benefits.

CXL Procedure
CXL is a 5-hour process, which includes two prongs to hold open your eyes, a series of four to five different drops, a sponge with drops placed on the eye and moves in a circular motion for a certain amount of minutes. After each eye session, the assistants apply UV lighting for some minutes. The procedure is designed to stop bulging of the eye surface and strengthen its tissue. Also, it is an out of pocket expense.

I continue to see the ophthalmologist. There are days where my eyes continue to experience sensitivity to light and are affected by allergies. The Dr. prescribed special contact lenses. Interestingly, vision insurance does not cover this disorder. It is considered a medical condition. There are three eye drops I use daily one of which is not covered by insurance. My Dr. is sensitive to this dilemma and offers savings coupons and discount cards to purchase it for less than $60. Otherwise, the prescription costs roughly $240.

The best remedy to cope with Keratoconus is to be open to loved ones. Try not to hide it. There will be days full of frustrations. When this happens, take a break from everything and rest your eyes. Look for other ways to enjoy life, like walking in parks, listening to music or audible books. Once the eyes receive rest, you will feel recharged enough to live regularly and usually.

Jacqueline T. Hill is a writer, editor, and digital marketer.

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