UK Keratoconus Self-Help and Support Association

Hi Friends,

I am new to this group and would like to share my story and hope will get some good suggestions.

My KC was diagnosed 2 years back. Please not it was diagnosed 2 years back, it could be there since earlier than that.

For me it was mainly in right eye R>>L although it was on left eye as well but right eye was badly affected.

It was diagnosed by a doctor and he suggested me that there are only two options: one is hard RGP lens and second is cornea transplant which is done for advanced cases.

He suggested me to take RGP lenses and advised me to visit an optician.

I went to optician and he did some basic checkup and asked me to come back after 5 days.

He got me those hard lenses for both of my eyes.

I tried to use those lenses, but it was really pain to carry those two lens.

I tried a lot those lens but it was all vain because it was really pain to my eyes.

I used them for 3-5 days and then I threw them away. And since then for last 2 years I am managing with one eye. I am an IT guy so I use computer for 9 hours a day. Probably those were not correct fit.

I just wanted to check if anyone else has faced similar problems with hard RGP lenses? or for me only it caused a lot problems.

6-7 months back I heard about CXL. I did lots of research on web and got lots of information. After I was convinced that this help in stop the progression of KC. I was ready for it and I got it done one 24/10/2009.

Vision is still foggy and hazy. My doctor has told me that I will have to use those RGP lens by RoseK after 4-5 months for my treated eyes. I am little afraid of those lens.

Please whosoever is using RGP, give your comments.

Also, friends please suggest the benefits of CXL people have observed.

Many Thanks,
Deepak Jain

Thank you for sharing that with us.

You should know that even after cxl many people still need to wear lenses.

I'm not entirely sure where you are, but in many places softenses are available for people with keratoconus.

Andrew

Hi Andrew,

Yes, I know that CXL is just to stop the progression of KC.

To get vision back we need those hard RGP or other alterneat like Intacs or ICL

I have heard about the synergeyes lenses --> http://www.synergeyes.com/

which seems perfect to me..from bottom there are hard to give good vision and on other place they are soft to give good feeling to eye

but my bad luck is that these are not distributed in India yet

Regards,
Deepak

As time goes by there are more and more soft lenses designed to give comfortable wear and good vision to people with keratoconus. Some people here have had good results with kerasoft 3 lenses; sadly I do not know about their availability in India.

Hi Deepak,

Let me introduce myself; I am an optometrist who works with keratoconus and related conditions and fit many patients after CXL.Fitting RGP lenses after this procedure has been known to cause central scarring of the cornea. This is because the cornea swells and changes shape a good deal after CXL and a rigid lens has no flexibility, which means at some point it may fit too steeply and at other times too flat.It is better to fit a soft lens that will flex with the cornea and I have fitted soft lenses only a few weeks after CXL. I do understand the difficulty you have wearing your RGP lenses, as these tend to be more uncomfortable in hot climates.

About soft lenses availability in India, as Andrew would say... someone will come along who has more information! I am also consultant to a company that makes soft lenses and also input into research and development. I am actually going to south India for two weeks in January when the KeraSoft IC (Irregular Cornea) will be launched there. I will be lecturing and and also teaching how to fit these lenses. The KeraSoft IC a more advanced lens than KeraSoft3 and will fit more types of cornea as it can be totally customised.

If you want any more information about availability, then do please contact me directly.

Lynn

Hi Lynn,

Many Thanks for your kind inputs.

My doctor said that RGP will be fitted in treated eye after 5-6 months. Is there any chances of central scarring if RGP are fitted even after 5-6 months of CXL treatment?

I heard a lot about KeraSoft lenses and its results and I am very much interested to go for these lenses.

But as per my awareness this is not available in India. Not sure alothoug, I will need to do further more reasearch.

Please keep me updated about your visit to South India as I may like to come and attent your sessions.

Many Thanks,
Deepak Jain

Thanks Andrew

Hi Deepak,

Probably not after that long,, but I have to say it depends on a) the fit and b) how well your cornea has settled.

As you have now contacted me by email, I'll keep you posted about India!

Lynn

Thanks