Personal Experience: Living With Keratoconus

Well I knew it was bound to happen.  I put it off for as long as possible. Procrastinated, made excuses winged, whined and complained but here they are as plain as the nose on my face.  A brand new pair of specs.  My first pair in over 15 years to be exact.  That’s half my life lived in denial in watching my world slowly fade out of focus.

I was 15 when an optician first noticed the monster sat behind my right eye.  I’d been seeing opticians off and on for three years by then, but most only check the front of the eye in those days.  But this guy was a bit ambitious and since it was the second time in three months I’d been back with complaints of headaches and blurry vision he had a peek in the back. ” You’re optical nerve is quite enlarged. It’s still within a good size range but we’ll just the keep an eye on it and see if there’s any changes later on ” He told me.  I always wondered what that meant.  What is an optic nerve and why would he feel, the need to keep an eye on it?

The optic nerve is a bundle of nerves at the back of the eye responsible for sending messages to the brain which is then interpreted as visual information.  Fun fact: your blind spot is the place where the nerve connects to the back of the eye.  Now any disturbance to this bundle can impact the quality of visual information produced.  Some health issues can cause swelling of the optical nerve which is in itself disruptive to vision.  In my case?  I just have a fat nerve bundle.  You see, like everything else in your body, the sizes of these nerve bundles vary from person to person.  Mine are a bit bigger than what is considered ‘normal’ but not bad enough to be seen as a problem, yet.

It was years later that I remembered that ambitious Optician.  My vision had continued to fluctuate and deteriorate.  I was spending a fortune on eye tests and new glasses to keep up with the changes.  On top of that I had officially been diagnosed with a condition called Optical Migraines.  So not only was my vision fading I was having massive headaches that caused auras and rapid visual disturbances.  So how does one cope?  Well at seventeen with final exams and SATs looming the options were very limited.

I eventually got through it all with the help of an Opthamologist Dr.Lefler at the Lefler Eye Care Center in Palm Beach Gardens, Florida.  He was the first eye specialist who realised that there had to be a connection between all the different symptoms.  Instead of just testing and writing a new prescription he put me through a barrage of tests to find out the underlying cause.  The end result was unsurprising.  I had a well known condition called Keratoconus. I also had a touch of Glaucoma, the irregular pressure fluctuations was what was causing the migraines and vision changes. At the time the treatment for this was a few weeks worth of eye drops to lower the pressure and the dreaded rigid contact lens!

Rigid lens are exactly what they sound like.  An unyielding sphere of glass that sat on the eye like an embedded grain of sand.  The pain was immeasurable!  The first few days were absolute torture!  I did not know how I would cope with them long term and immediately decided that I’d only wear them when absolutely necessary, for school, work and important activities.

Living in Florida this immediately became impossible.  There is just something about the air, the light and the atmosphere that sucks the moisture out of a person and anyone who wears contacts knows the importance of keeping the eye and lens moisturised.  It allows the eyeball to swivel around, helping the lens float with the motion and most importantly moisture keeps it from sticking to the surface.  Within a month I had endured two eye infections caused by scratches from either my nails when placing or removing the lens, or the lens self sticking and scraping.

I gave up and resigned myself to a life of low vision.  As an art student I struggled to complete assignments and commissions.  My style of drawing and painting varied depending on how well I could see.  Keratoconus ate away at my cornea and life dragged on, there were wonderful years spent teaching art in Florida.  Amazing times on the beaches back home in Turks & Caicos Islands.  All the while thinking that one day I may no longer be able to see any of this.

Another beautiful day on Grace Bay, Providenciales Turks & Caicos Islands 2010
Another beautiful day on Grace Bay, Providenciales Turks Caicos Islands 2010

It wasn’t until 2012 that a British GP referred me to University Hospital Soutampton Eye Clinic that I sat before a bank of machines enduring one test after another.  The results this time?  Much had remained the same!  I still had advanced Keratoconus, but it was well within the range that new contact lenses could help.  In the years I spent on the beach medical science had improved dramatically in the field of contact lens.  New gas permeable rigid lens and sclera lenses were available; they worked like the old rigid ones I hated but were lighter more comfortable and surprisingly did not feel so much like a grain of sand scraping about, I hardly felt them at all!  It was amazing!  Although, it took some getting used to as my eyes were retrained, but in the long run, I could see better for longer periods and soon forgot all about my vision problems.

So why am I wearing glasses?

The thing about Keratoconus is that it is progressive.  I soon became aware of headaches after wearing my lens for a few hours.  Then my vision began to blur, I could no longer make out street signs or bus numbers.  It became hard to judge the distance of traffic and moving objects.  Then the migraines and auras started up, it was starting all over again!  Suddenly every few weeks my new lenses no longer worked.  Appointment after appointment, test after test with unpredictably different results.  Because of the frequency of removing and replacing the lens I was also going through them quicker than normal.  I tore them, I lost them, I let them dry out!  The costs of replacements were becoming too much to keep up with.

So I sat down with my Ophthalmologist and discussed the reality of my situation.  Contact lenses were just not for me.  I needed something that I could easily and immediately take off and put on when needed.  A pair of glasses could help, but it would take time to find a median prescription that would be useful enough.  I did a few eye tests on different days and the Ophthalmologist compared them all and decided the best solution.

So for the first time in fifteen years, prescription in hand I set out to find the frames that would define my face. And here they are:

Testing my new glasses with a trip to the beach!
Testing my new glasses with a trip to the beach!

And what better place to test them out than the beach?

Everything looks better with a new pair of specs!
Everything looks better with a new pair of specs!

Karla (SelectSpecs)

Life is what you make it and Im determined to make the best of it! Ive been an artist a poet and a childrens entertainer! I have lived and worked in America the Caribbean and England. And oh the tales I have to tell!

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