Having keratoconus can be tough and you think you are alone, well we have good news......you are NOT alone. If you are fed fed up with scaremongering, hearing about expensive treatment options and going around in circles, then join the original #kcfamily We have the busiest, most active and supportive keratoconus Page and Group on Facebook, … Continue reading Keratoconus? Join the original #kcfamily online – KeratoconusGB
Before I start with the righteous posting about my journey, self worth and all the other nonsense, it’s probably best to start explaining what the condition is. Firstly, Keratoconus does not mean I’m going to transform into this:
Keratoconus is a disorder which affects the surface of the eye (cornea) which causes it to thin out and form a cone-like shape as opposed to the normal, curved surface. Effectively, it turns the front of my eye into something like this:
It doesn’t seem like much of a big deal. So I’ve got slightly pointy eyes. Spock had slightly pointy ears, but it seemed to work out ok for him, right? Unfortunately not. The cone-shaped curvature and rough surface (sadly it does not thin out evenly across the cornea) means that the light that enters the eye is…
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So at the end of the last post I was now waiting a year to see how the keratoconus was progressing. At the time, the consultant in the hospital also said that if I experienced any discomfort or troubles to get back in touch and make another appointment. That was May 2012.
My son was born in June 2012. This is quite an important event for more than the obvious reason. As the year progressed, I started to struggle more and more with my eyesight, even with the new prescription that I got in my initial opticians appointment. At first, I put this down to being a new father.
But then fortunately for myself and my wife, our son developed a liking for sleep after just a few months and our own sleep began to return. The struggles with the eyesight did not disappear. In late October, a long late…
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As I mentioned in the What Is Keratoconus page, keratoconus (KC) is an eye condition where the structure of the cornea distorts, thins out and becomes cone-shaped. One of the more recent and successful treatments in halting the progression of KC is corneal collagen cross-linking (CXL). The following video is a pretty good in describing, and then showing, the procedure itself. If you want to skip to the uncomfortable cutting bits and avoid the boring words, it’s from 1.00 onwards.
This technique is designed to ‘fix’ the collagen in the cornea in place so that progression is halted. It does that by reacting the collagen with riboflavin in order to cross link the polymer structure and make it more rigid.
Danger! Ahead be Chemistry!
The mechanism of this reaction was investigated in 2010 by McCall et al. who looked at a variety of pathways and elucidated which one was the…
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Continuing the story, I had been referred to East Grinstead’s Queen Victoria Hospital for corneal collagen cross linking (CXL) in my left eye. I’m going to split this up into two parts – the what happened (this one) and the science bit (the other one). Just so that if you’re not interested in the science behind the procedure, or watching the procedure itself, you can ignore that part!
East Grinstead is a bit of a pain to get to. It’s either a trek around the M25 in the car or a cross-London (and subsequently ridiculously priced) train journey. However if you know when you’re going, you can get the train fare down by booking online and I managed to get most journeys to QVH down to £25.
My first appointment with the doctors there was remarkably pleasant. They appeared knowledgeable, far more so than those at…
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The photo to the left is how I see the world with Keratoconus, even with my high prescription glasses. Well, this how I see with my right eye (the good one), my left eye is even worse. This makes my life a lot difficult at times. u_u
I can’t read a real book anymore, which was something that I loved to do once upon a time. I have a Kindle for reading, as I can adjust the font to “grandma” size, however it’s not the same as turning the actual pages and smelling the fresh ink of a hard copy book. I get bored with my Kindle, with half of the fun experience of reading stripped away, and haven’t finished a book in a few years now.
Writing emails, blogs, and novels take effort for me to do. I can’t spend as many hours doing so, as my eyes will…
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