Keratoconus - my life of distortion and glare

As a child I always squinted. I never could tolerate glare and I never knew why. I remember, standing in the school Quadrangle before school started, in the blazing, hot, glary Australian sun, unable to keep my eyes open. So, eventually, I learnt to just close them until it was time to walk into class.

I knew a little about Keratoconus through my older brother, who was diagnosed at age 15. He squinted as often as me and had to hold everything up to his head to read it. We often laughed at him. Not in a spiteful way.

The glare is almost unbearable for me. I am five in this photo, many years ago now.
The glare is almost unbearable for me. I am five in this photo, many years ago now.

At age 22, I decided to go for my licence exam. I failed (when I had to read the eye chart with my left eye)
"Don't come back until you've got glasses" the examiner said.

I was so keen to get my licence that I raced down to the Optometrist to see if I could get myself a pair of glasses.
After examining my eyes he said to me, "You have a very rare eye condition in your left eye - you have a conical cornea"
I was a bit taken back and replied, "Do you mean Keratoconus?"
He was amazed I knew the word.
"Yes" came his reply.

I went to see a specialist who diagnosed me with Keratoconus. I was prescribed hard contact lenses but often struggled to wear them. I had moderate KC in left eye and Mild KC in right eye.

As the years progressed, I started wearing glasses for long-distance but the haze and glare always annoyed me.

In the early 2000's a specialist suggested I go on the cornea donor list. He specialised in cornea grafts and I underwent a partial kerataplasty(also known as lamellar keratoplasty ) in 2002. My brilliant surgeon and specialist was Dr Maloof from Westmead Hospital, Westmead, Australia.
Unfortunately, it didn't restore perfect vision(long-distance) but my close vision is quite improved.

I stopped driving due to night blindness.
Climbing stairs is often difficult and I need my husband to help me if I ever walk outside at night. Like most people with Kerat,conus, I suffer with depth perception.

I wear glasses for my long distance (watching TV mostly) but can get by with the vision I have. I feel very blessed because I have a brother who has undergone two transplants and still having to wear hard lenses.

I'm entering my 50th year this year and have no idea what the future holds as far as my vision is concerned.
My late mother suffered from Macular Degeneration so I know I am at high risk of developing the disease.

HOW DO I PROTECT MY VISION AND MY EYES?

I wear sunglasses whenever I walk out the door - even if it is to collect the mail or hang my washing on the line. 
I take Lutein vision (for macular health).

I take this condition seriously but sometimes make "light" of what I see.
So I boast often - "I get to see two moons, often three, or four moons at night" or claim to see beautiful displays of light flying across the night sky.

Two of my siblings have Keratoconus so it seems this disease is obviously hereditary. 

Not having perfect vision can be distressing. You have to be careful crossing roads, climbing stairs - even walking.

It's great to know that treatments for this condition are improving and hopefully one day there will be a cure.

I've had this condition for almost half of my life and it doesn't get easier but I have learnt to adapt.

Stefany

2 comments:

  1. Very glad to hear that at 50 you have this condition without any extreme symptoms. Is corneal cross linking in your future plans or maybe intact implants? what is your vision after corrections? i have 20/40 corrected and just barely get by so i feel your pain. Hope your cornea stays stable, thank you for sharing!

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  2. thanks for replying. I can't remember what my vision status is and I don't think cross-linking is in my future(I think I am too old for that :( I am not sure about intact implants. I think my cornea is pretty stable..this procedure, apparently, has a good rate in terms of rejection. Thanks for your kind words.

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