Reflections on my 6 Year Journey

My KC Journey

Well, seeing as it is (nearly?) six years since that fateful day of my diagnosis with keratoconus, I thought it would be time to share some reflections on the time since that day.

I feel I am more accepting of help from others.
I do not know where I got this from but I have this stubborn drive to be independent and to be able to do things myself. I have learnt through the years that it isn’t always possible when you live with keratoconus. Without the support of my optometrist, my family and others with keratoconus,  I would have been lost.

Being Able to Achieve
It took me several lenses, a whole lot of money and quite a few meltdowns but I have now learnt to wear two pairs of lenses, one pair of RGP lenses and a pair of soft lenses. I am also able to manage the…

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Diagnosis: A long horrible journey.

Damaged Brown Eyes


Going in for a routing eye exam and thinking to myself, “this is going to be a waste of time.” But my co-pay was only $10 so what the heck.

They tell me to cover one eye and read the letters and then switch. I tell them it takes me a LONG TIME to adjust to light (RED FLAG). So we wait, they get impatient and tell me we can skip that part. Then the preliminary examination begins aka TORTURE. I went in and my eyes were raped. Yes, raped. Machine after machine after machine, and then came the worst: retina picture time. A giant flash right into my eyes: one at a time.

Then it was time to see the optometrist. I sat there pertinently waiting for the effects of the flash to wear away…

The optometrist comes in, we chat, then the fun begins. She asks if I…

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8 Month Post-Op (Corneal Transplant Update)

Life's a Performance

Last time I updated about my corneal graft, it was at the 5-month mark. Well, guess what? Today’s officially been 8 months since I had the procedure done! *cheers*
There’s not much to say still. One more month to go until my eye appointment. My vision is slowly, but surely, getting better. I still can’t read very well, but I can read well enough that I can somewhat use my computer without squinting.
My left eye, however, seems to be getting worse (the one that still has the KC). The SynergEyes contact is always a pain in the ass to wear but I have to! I have to deal with college. At least I don’t have to wear it EVERY day, since I’ve made it a point to have classes only every other day to help tolerate the lens better. Still, I can’t wait till I don’t have to use…

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What an eye-popping day, literally.

Damaged Brown Eyes

Today I had a horrid day.

As I attempted–for the third time– to put on my mini scleral lens on my left eye… it popped out. Not all the way out, but out enough to the point that I could not close it. I jumped up, paced back and forth, terrified, not knowing what to do… every time I glanced at the mirror I became more afraid. I looked scary. This had never happened to me before. Moments, felt like hours though, my eye popped back in. It was super red. I broke into tears.
Then I realized I couldn’t find my lens. And I felt something in my eye. Yes, its in there– or so I thought. A Bart ride, drive, and long wait at the optometrist later the Dr. confirmed that there was no medical possible way that a mini scleral could get stuck behind my eye. The…

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Keratoconus my story by Corrina Taylor, UK

I have been an anxious person for as long as I can remember… No, sorry, let me rephrase that, I have had anxiety for as long as I can remember. The difference is that in the core of who I am, I don’t believe I am an anxious person, but that anxiety is a habit … Continue reading Keratoconus my story by Corrina Taylor, UK


Playing The Hand I Was Dealt


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I was in deep thought about my collagen cross-linking (CXL) surgery awhile ago.  I’ve read every journal article online about epi-off CXL, poured over the interviews with the top surgeons and their speculations on whether CXL will last in the long-term for keratoconus (KC), and thought about everything my top-notch surgeon told me at my pre-op appointment about the efficacy of CXL.

Since epi-off CXL was first performed in Dresden, Germany in 1998, the studies have shown there is no progression of KC and in the small percentage of people who don’t benefit from CXL from the get-go, it is effective when the surgery is repeated. This abstract from 2006, while not long-term, demonstrates the halt in progression.  So, why was I worried?

Well, it wasn’t until I found my great optometrist this summer that I learned that although I look like I have KC per my…

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Keratoconus & CXL my story by Odai, USA

Hi my name is Odai and I am sharing my story with everyone. At the time of writing, I am 21 years old and I will be 22 next month. I live in the state of Illinois in the United States of America. I want to start off saying I never had contacts or glasses in my … Continue reading Keratoconus & CXL my story by Odai, USA