UK Keratoconus Self-Help and Support Association

Hi

Nice find a forum about Keratoconus I had no problem with the treament I had with this heh Thank to sunderland eye Hospital they have been brillant XD only one slip up they got me to try contacts I think 3 years ago and I didn't like them , Hard lence eww i could feel it in my eye D: but after that they seem not want to see me. I am so glad i keep on see people at spech savers xD they told me go back hospital. which I did and I got a scan of both my eyes and to see how it going. I have Keratoconus in my Left eye I think it got spot when i was like 18. I had now for over 10 years wow hasn't the time went by fast heh. but after scan found out it not in my right eye few . but nothing much has changed. So now I am going in April once a year they are now keep good eye on me

But I like know is it normail tht everytime I go for eye test my left eye would change and I got get new glass heh I don't mind I love wear glasses xD my left eye is compelet blurry now it hard to see out that eye but glad my right is great xD

heh sorry about my spell and nice be on the forum :3

Anime,

Hello and welcome to the forum!

I am sorry that you have keratoconus and haven't been very successful with lenses. It is good though that you can see with glasses and like wearing them!

Yes your vision can change and you need a new prescription every time you get seen. Keep on wearing glasses though if you see well!

Let us know how you are getting on, love Claire X x X

ask the hospital if they have any of the newer soft contact lenses for KC, such as kerasoft or the hybrids such as synergise lenses (just two brand names out of many). Some of these in recent years have had massive progress and a lot of people get on with these for a lot longer periods than they did with RGP. Also did the hospital not try you with piggybacking? this is where you have a soft lenses with a hard lens on top - again lots of people find that to be more comfortable than just a hard lens.

similar to you i have KC significantly in my left eye (dont even bother with prescription in my glasses for that eye) and have very very early stages of KC in the right eye. I survive with glasses and am still at driving standard with the right eye, i just dont get on with CL due to dry eye - pain in the rear end as i get great vision with CL in both eyes.

Also there are two procedures - Intacs (available on the NHS) and CXL (still at trial stage on nhs, available privately) - for you to read up on, consider and discuss as options when you go for your annual check ups. Some hospitals dont have much (if any) knowledge of one or both of these procedures - mine didnt until i asked some questions - so take the information with you. there are leaflets detailing the procedures somewhere on this site.

Just some things for you to consider, for your future.

wow thanks for the advise guys I never knew about softer lence and have 2 lence on, I am going hospital in april so be nice have more chat with new information nice know It normal what i am going thought and it still safe for me to drive still learning heh. I do perfer wear my glasses but nice know I got more option in future and I am not only one who going thought this. I didn't know there was more that can be done for me in future

heh it put my mind at easy at bit thank you ^_^

there are opticians and other sufferers who can give you more advice about different lenses that are available, just remember what works for one of us, wont work for the next person. Another thing to consider when wearing CL is using a wetting solution to help with comfort if you want to try CL again, this can help comfort.

My advice to you would be start a list of questions to take with you to your next appointment re CL etc, take someone with you and ask the questions. I, for a number of years, just went along, got my eyes checked and didnt consider other alternatives let alone ask questions about my condition or how it had progressed.

Always take your opticians guidance re being legal to driving, esp when you have only one good eye in glasses. I went through a phase nearly 18 months ago when i had numerous problems with my eyes, and my vision reduced to being just legal (dry eye aggravated by CL wear) - tough on me when i love my motorbike. However i had to be sensible and my opticians advice was to decide each day if i was legal, as sat in the chair i could blink and read the line fine, blink again and would lose half the line. My hubby worked out how far from our drive was the legal distance and whenever i wanted to go out (either car or bike) i would check my vision first. Luckily for me my vision and dry eye has settled down (however not currently wearing CL at all as can manage with glasses for my good eye and i dont want to risk that vision again) and i dont have to do this anymore.

Thank Lizb for advise nice hear over people story about have this. Yeah I been talk to my mam about it and would be nice take her along and she can get some information about it and try understand more what it like plus she can ask some question too xD. and to get some question together for appioment come up is is a great Idea at min my glasses are good for me at min last time doctor said to me as long your happy and your can see well in your glasses that great and cl can be for over time . It was nice gave them go but they feel weird I got lot ask next time I go to doctor I maybe a while in there next time

I initially tried CL when i was first diagnosed (nearly 10 years ago) and did not get on with RGP CL then - I was only being given CL for the left KC eye, and still using glasses for the right eye. As i could still get vision in both eyes at the time with glasses i gave up on CL. I then tried CL about 6 years ago when i moved towns (and therefore hospitals), again piggyback lenses. Again i couldnt get comfortable with them, however i think this may have been aggravated by the solutions i was also given to use. by this time i was still getting vision through glasses for my right eye, but had gone onto a balance lens for the left - this did take some getting used to and a few bruises . I gave up with CL again after 9-12months of trying. i then went back to try CL nearly 2 years ago, got a solution that suited my eyes, comfortable CL initially then dry eye started . I am still managing with a strong prescription for the right eye in my glasses (have had these glasses for around 3 years now, so stable prescription other than the period when i was wearing CL and my dry eye was bad). As you can see from my history i keep going back to try CL (i get better than 20/20 vision with CL annoyingly), and i will continue to do so in the future, as there are always developments in CL for KC.

I had CXL done on my left eye last october, and have had some minor improvement (board doesnt need to be quite so close to me for me to be able to read the top line) in that eye. I am looking at having Intacs (providing i am suitable still) done later this year. I am had CXL done privately and am also looking at having the Intacs done privately as well at the same clinic. CXL hopefully will stop the progression of my KC, this was my aim in the first instance - getting a slight improvement is a benefit