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Post Info TOPIC: Diagnosed with KC Today - Confused
Anonymous

Date: Thu Oct 30 9:24 PM, 2014
Diagnosed with KC Today - Confused
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Hi all



I just found out I have KC today. Very confused since I am 38 and never thought I had it and no eye doctor ever mentioned it as a possible cause for the severe astigmatism I have had since I was 5!

I have worn soft contact lenses (toric) for over 20 years and every year went to the doctor for an annual check up, got new lenses and went on my way. This last year however, I notice more blurry vision and more difficult time at the computer with the contacts on. Since I don't have a baseline of good or bad vision (it's always been bad), I chalked it up to bad lens material and waiting for my yearly check up this week. 



What a shock when I couldn't read anything doing the standard eye exam and the doctor going "better or worse". "One or three". He immediately referred me to a cornea specialist and literally 3 hours ago I saw graphs with a lot of reds and orange circles. It didn't like good and the diagnosis wasn't either. 



Not only KC, but in advanced stages. I am slightly in shock I suppose. Maybe I am so used to bad vision I never noticed the changes? But after reading up on KC it seems for the last 20 years I have been covering up the symptoms with my soft lenses and since that was sufficient, I never complained or my body slowly professed to this stage of KCwothout me or any doctor noticing. 



So now the confusion and sorry for venting. The specialist said I'm a board line candidate for CXL but should try it since it may stop this to avoid the cornea grafts. Right eye worse than left. After the CXL then hopefully new hard lenses or maybe even back to my soft. (Never had any lens rejection issues!) 



But reading on CXL I'm seeing the pros and cons about epi on and epi off. My specialist is in the epi on camp for his studies. But a lot of debate on utlitity...I also may be too thin for an epi off but need help from you all on what you've learned before I shell out a lot of money for a procedure like epi on. 



Thanks again for listening. I think I'm still processing all of this and don't know where to turn. 





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Executive

Status: Offline
Posts: 155
Date: Mon Jan 5 5:05 AM, 2015
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Hi,

Read up as much as you can. Be careful though as its best to go by peer reviewed studies from respected journals. No one can do your patient research for you. Its your eyes and you have to weigh up the pros and cons to anything which is discussed and finally opt for.

It also depends if you are a candidate with regards to the options and this can only be assessed after tests are done and a consultation given on the results.

You need to do this and keep a check on progression.

Good Luck

Wayne



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Newbie

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Posts: 1
Date: Mon Feb 2 3:06 AM, 2015
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Hi I was 13 when I was first diagnosed, that was forty years ago. Unfortunately, a lot of the options available today were not available to me. My KC progressed to advance & I had my first four corneal transplants (two in each eye). I've finally excepted the fact that my vision will never be "normal" & that I'll have to make adjustments to do every day things. Do all the research you can do. Look at holistic approaches, as well as traditional approaches. There is so much available to KC patients find what works best for you. Good luck.

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