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Post Info TOPIC: Living with keratoconus in India and not knowing it
Anonymous

Date: Thu Dec 10 6:54 PM, 2015
Living with keratoconus in India and not knowing it
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Hi all

I wanted to share my experiences with people with the hope that a cure and cause for this disease will be identified soon. Also, people in India are not aware of the disease and it may go unnoticed until its too late.

My experience with this disease has been strange as I never knew I had it. I am a 30 year old female from India, now residing in the USA. I never had any symptoms. All I remember is that as a child ( I have worn glasses since I was 6) and then as a teenager, my eye prescription used to change very often until it stabilized when I was about 20 years old. I was always given a spherical prescription and never a cylindrical power. And my far sight was always bad - I couldn't read billboards or road signs from a distance. Once my prescription stabilized, I started wearing soft contact lenses.

About 6 months back, I went to an optometrist in the US who diagnosed me with KC. I was baffled because I had never heard of the disease and I never had any symptoms that the optometrist mentioned. I went to a reputed ophthalmologist for a second opinion and he agreed that I had mild KC and that my right eye was more affected than my left eye. He also mentioned that I have probably had KC for 5-10 years but did not know it. I stopped wearing the lenses that I had been wearing and went to an optometrist again to get my eye power tested. The results were weird - the automated testing gave me the exact spherical power that I had been using all along but the optometrist tested the power manually to give me the correct cylindrical power. I got a pair of glasses made to the prescribed eye power and waited to get my eyes checked again. I have been using those glasses for about 6 months now. Daytime vision is fine but I see halos and ghosts around lights at night. I also have slightly double vision at night.

Today, I got my eyes checked by the ophthalmologist again and he confirmed that my KC is stable and not progressing at all. He recommended coming back in another 6 months and also wearing lenses which would give me better vision than my glasses. Since there is no way for the doctor to know when and how the disease started and progressed, I am guessing that I had it as a child where it progressed (as evident by my frequent eye glass prescription changes) and then it stopped on its own. I did not have any other symptoms so I cannot be sure. Nobody in my family has KC so i am not sure why I have it though its my guess that environmental conditions played a role. Also, lack of awareness about this disease in India caused it to never get diagnosed. 

I hope parents in India will make sure they get their children tested for KC as soon as they start wearing eye glasses to ensure they get the required treatment before the disease progresses beyond repair.



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Posts: 53
Date: Fri Dec 11 7:20 AM, 2015
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Its tough the more you look at it. Contact lenses do give better vision but be careful in their use, as KCers need to wear them longer than most people. They say eye rubbing is bad in KC however sticking contact lenses in your eye ok ?! Opticians sell glasses and contact lenses and so there is no incentive to find KC or have a topography machine. The list goes on...



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Date: Wed Jan 27 5:00 PM, 2016
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If you have mild KC, normally It progress. You need to find the Ophthalmologist(cornea specialist) who do CXL (cross linking). CXL stop or slow down progression. I have done my CXL in India in 2008. and after that my KC progression is very less or I would say it stabilized. They will also help you to get better vision by hard lens , hybrid lens or sclearal lens. With these kind of lenses you will get very good vision with no halos and ghosts images. Lens fitting process is little lengthy.


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Date: Thu Feb 18 12:59 AM, 2016
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KC most often appears during adolescence, so trying to screen children is probably not effective. It also quite rare and difficult to detect in the early phases without a corneal topographic mapping. So screening for KC is probably unrealistic. KC infrequently progresses "beyond repair," which I would take as being the point where you need a corneal transplant. You should start having severe vision symptoms before things get to that point and you should be referred to an ECP (eye care professional) who can do corneal topography and make the proper diagnosis once the vision symptoms become pronounced. 

Do try to find an eye care professional who has the experience and patience to deal with a KC patient. A good contact lens fitting can be a big help. KeraSoft IC lenses are relatively easy to fit and easy to adapt to, so that can be a useful option if your choice of ECPs is limited. 

I know that corneal cross-linking is now generally considered advisable for KC but I'd want to have evidence that my KC was progressing before I underwent the procedure. KC is unpredictable. It does sometimes stabilize on its own. In my case, I aged out with naturally hardened corneas long before cross-linking was an option. 



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