Keratoconus: Jan - Denmark

Jan's Keratoconus Story

By Jan in Denmark

I once read a book by my favorite Algerian-French writer Albert Camus who mentioned something about how to deal with any kind of permanent disease. He himself suffered from tuberculosis and had to change his life style because of it. For instance, he gave up playing his favorite sport football.

I don’t think I gave this quote much consideration until August 2006 where I was diagnosed with a progressive eye disease called keratoconus that basically turns your cornea into cones or the pyramids (as I like to say) as you grow older once you get it at a young age. I suddenly had to learn how to deal with a progressive disease, so the first step for me was simply just to accept it – so I did. However, accepting this disease to progress without any resistance I could not accept!

The whole story leading to my diagnosis is a bit of a joke itself so I will just mention it “briefly” here: I am a bit stubborn as a human being and the first sign became very apparent when as a teenager I continuously refused to wear glasses. I simply could not accept that nature gave me bad vision. Today I’ve more accepted the idea of glasses, but I still refuse to wear contact lenses since I believe they do nothing but harm to your cornea.

This stubbornness of mine continued till I finished my undergraduate university studies with some difficulty. From then on things went downhill and I no longer could continue with my masters and also I began to notice my vision getting worse and fluctuating. More and more everyday life problems were just accumulating and I started to get a severe depression.

There is a rational explanation and an irrational explanation (which unfortunately is more disturbing) for why I did crosslinking just 1 month after I got my diagnosis.

Rational explanation: Imagine you are working for the secret police and you know a group of people that are terrorists. Also, you are completely confident about what their target is. You are not sure when and if they are acting within a given timeframe. However, you have evidence that indicates that there is a chance of attack within this given timeframe. You can lead a possible defense operation with a plan that has some chance of working. You don’t know if this plan will create more problems later on. How and when should you act? Should you act at all?

In my case: I have evidence of keratoconus, I am 22 years old, and I have had troubles with my vision since I was a teenager and I have noticed my vision is getting worse (but I have no topographical evidence that spans a period of 3-6 months, only my own judgment from what I can see through my eyes). The timeframe of Keratoconus is the following: It is most likely to “attack” (progress) when you are a teenager and when you are somewhere in you twenties.

As you can see there is a great chance of attack within my time frame.

The question is not whether crosslinking (your defense plan) is working or not because in both cases you are just at the same problem as before (you just loose time, money etc. which in my case can never be an issue because I consider my health more important). The important question is what happens if you plan creates more problems later on? In my case I can not wait for long-term results because I then increase the chance of my eyes worsening and thus it will make no sense to do crosslinking anymore (it has to be done at an early stage). The doctors in Dresden mentioned that those people treated since 1998 did not show any sign of progression (in Denmark results are considered long-term when they reach 10-15 years. In my case I should wait another 2-7 years if I wanted secure data). But they also mentioned that there have been two persons under 18 where crosslinking did not help. Both cases already had a very weak cornea and showed fast progression of keratoconus before treatment.

Irrational explanation: After I did rational reasoning (see above), I decided to listen to that part of the brain (you can call it you intuition, soul, or whatever you like) that goes through all that stuff one goes through before making an important decision that can have positive as well as negative consequences. It is a very personal and distinct feeling I can’t describe with words. I decided to go to Dresden and stayed there from September 17-22 2006 alone…

To read more of Jan’s story (and other members stories) please visit the forums, his story continues in the X Linking forums at kcfrredom.org, where he writes in detail with pictures of his visit to Dresden, Germany (the home of Crosslinking).

All content is subject to change from first appearing and is intended as an informational series and should not be used as a substitute for medical advice.