My story
Posted: Fri 15 Jul 2005 3:00 pm
Hi everyone.
I have been reading topics on this forum for a while and found some interesting information but have not posted very often. I am hoping that my posts will help others as others have helped me.
I was first diagnosed with keratoconus in both eyes, left eye worse than right, when I just turned 17 at Nottingham QMC. My eye sight suddenly deteriorated within the space of 2-3 weeks in the summer holidays at the end of my first year at college. I made an optician appointment as I was very concerned. The optometrist noticed a possibility of me having keratoconus and referred me to the eye clinic at the hospital where I was diagnosed from my topography results. Spectacles did correct my vision to some degree but I noticed my vision getting worse every month. I was wearing spectacles to correct my vision till I was 18 where the ghosting effect and multiple images caused too much distortion in my vision that I thought I should start wearing contact lenses. I was then refereed to the CL clinic at the QMC. I was first wearing RGPs which were very difficult to tolerate and get used to. I gradually built up a wearing time of about 6 hours over the first month. They were very difficult to wear during college hours at I would always look like I was crying in lessons and my eyes were red. My vision improved greatly over glasses but the ghosting effect was still present. These also popped out of both my eyes while I was driving once which wasn’t very pleasant.
After about 5 months of wearing RGPs and several different fits I could no longer tolerate them and was given soft-perms. At this time I no longer wore spectacles and they could no longer improve my vision so I had to rely on the time I was wearing my CLs for sufficient vision for daily tasks. After the first hour of insertion these lenses were a lot more comfortable than RGPs and I built up a long wearing time in a period of a week. I could basically wear these lenses from when I woke up to when I had to sleep approx 12-16 hours with minimal discomfort. At times I would forget I was still wearing them. However, after 2 weeks of continuous wear my left eye felt very sore. I went to the CL clinic and was told I had a corneal abrasion but could not be told of the cause. I then gave my left eye a break from wearing CLs for a few days and continued to wear them as normal. They same problem occurred after a further 2 weeks and continued also in the right eye. I was given several refits but the problem persisted. I eventually worked out that it was because I was over wearing them and then limited the wearing time down to a point where the problem stopped. There then came a point where the maximum safe wearing time was 8ish hours. 8 hours wearing throughout the day was not sufficient for me so I began to alternate monocular vision between left and right CLs. I would wear the right for the 1st 6 hours of the day, then take it out and insert the left lens and wear that for the next 8 hours so I would get a total of 8 hours wearing time.
I continued alternating monocular vision at the start of my first year at university which was 4 months after first wearing the soft-perms but then still got the abrasions on my corneas due to excessive wear. I then went back to the CL clinic and tried piggyback lenses using my old RGPs which resulted in cloudy vision after an hour of wearing them. I then tried kerasoft lenses but could not correct my vision as the ghosting and multiple images caused too much distortion but were very comfortable. I was then given semi-limbal lenses, these are RGPs the size of a standard soft lens. The were a lot more comfortable than standard RGPs and did not move much when I blinked. However, after a few hours of wearing them my vision would become cloudy and the lens would dry out quickly. Refresher eye drops would not help much and having to keep taking them out and applying more conditioning solution every other hour was very annoying especially when a lecture lasted 3 hours. I then continued to wear the soft-perms as I did not have a problem with my vision getting cloudy.
After 6 months of wearing the soft-perms, when I first inserted the lenses they would be very painful for the 1st 2 hours but would feel fine after. My eyes would get red and very watery. This was getting worse so I could no longer cope in lectures. As a result I asked for a private corneal graft, but as I was already on the list for 6 months I was given a date for one on the NHS. I then intermitted my 1st year just before the exams, as I could not sit them in my current situation with the limited time I had to study and had my corneal graft on my left eye on the 29th of June this year. I will create a new topic for my recovery of my graft for others to read up on. My vision prior to the graft I could get 6/60 from either eye. I could just about get 3/60 from the right but not even that from the left. I was severely myopic in both eyes. If I was to view my computer screen without lenses it would have to be 2cm from my right eye and I could not even see it with my left. From my topography results at my pre-op check up my left cornea was a lot worse then when I was initially diagnosed with keratoconus, as there was a large colour distribution of red, pink and orange.
I have now just turned 20 and this has been my experience my experience of keratoconus over the past 3 years. There are a few causes of keratoconus. I do not believe that in my case it was genetic as no one in my family/generation has it or any other serious eye conditions other than myopia or hyperopia and is corrected by glasses. I feel that it was caused my extensively rubbing my eyes since childhood as I often had very irritated eyes. If I knew it could cause keratoconus I would have avoided it. I still rub my right eye sometimes as a force of habit.
Going through life and having to deal with keratoconus was difficult, although I did manage to cope with what had to be done. Being a teenager and being unable to do the things I could do before and not being able to do many other things others where other teenagers could was very frustrating and annoying at times. Even doing simple tasks like shaving or watching television clearly became difficult. As my sight became worse I could no longer see people’s faces clearly and they often thought that I was ignoring them but that wasn’t the case, I just couldn’t see who they were.
It is challenging having to deal with something like keratoconus. Every day may seem like a struggle but with time you will learn to deal with your problem so be patient. It was very annoying having to spend time in the morning and in the evening having to clean, insert and remove lenses but I eventually got used to it and took next to no time placing them in and removing them, although there will be some days when it might not be that easy. It will be irritating at times not being able to do some things you could before but you will find so many other things that you can now do. Do not seclude yourself and get disheartened, but try to come to terms with your condition and accept it. The sooner you are able to do that the easier your life will become and the more you will learn to appreciate other things that you previously may have taken for granted.
From what I had to deal with I really wanted to be able to help myself and others in the same and similar situations as myself, which is why I chose to study optometry. I will soon be continuing with my degree after I feel comfortable with my graft and am sincerely motivated to be able to do so.
I look forward to being able to exchange advice and comments with all of you on this helpful forum.....and sorry for the long post
Asif
I have been reading topics on this forum for a while and found some interesting information but have not posted very often. I am hoping that my posts will help others as others have helped me.
I was first diagnosed with keratoconus in both eyes, left eye worse than right, when I just turned 17 at Nottingham QMC. My eye sight suddenly deteriorated within the space of 2-3 weeks in the summer holidays at the end of my first year at college. I made an optician appointment as I was very concerned. The optometrist noticed a possibility of me having keratoconus and referred me to the eye clinic at the hospital where I was diagnosed from my topography results. Spectacles did correct my vision to some degree but I noticed my vision getting worse every month. I was wearing spectacles to correct my vision till I was 18 where the ghosting effect and multiple images caused too much distortion in my vision that I thought I should start wearing contact lenses. I was then refereed to the CL clinic at the QMC. I was first wearing RGPs which were very difficult to tolerate and get used to. I gradually built up a wearing time of about 6 hours over the first month. They were very difficult to wear during college hours at I would always look like I was crying in lessons and my eyes were red. My vision improved greatly over glasses but the ghosting effect was still present. These also popped out of both my eyes while I was driving once which wasn’t very pleasant.
After about 5 months of wearing RGPs and several different fits I could no longer tolerate them and was given soft-perms. At this time I no longer wore spectacles and they could no longer improve my vision so I had to rely on the time I was wearing my CLs for sufficient vision for daily tasks. After the first hour of insertion these lenses were a lot more comfortable than RGPs and I built up a long wearing time in a period of a week. I could basically wear these lenses from when I woke up to when I had to sleep approx 12-16 hours with minimal discomfort. At times I would forget I was still wearing them. However, after 2 weeks of continuous wear my left eye felt very sore. I went to the CL clinic and was told I had a corneal abrasion but could not be told of the cause. I then gave my left eye a break from wearing CLs for a few days and continued to wear them as normal. They same problem occurred after a further 2 weeks and continued also in the right eye. I was given several refits but the problem persisted. I eventually worked out that it was because I was over wearing them and then limited the wearing time down to a point where the problem stopped. There then came a point where the maximum safe wearing time was 8ish hours. 8 hours wearing throughout the day was not sufficient for me so I began to alternate monocular vision between left and right CLs. I would wear the right for the 1st 6 hours of the day, then take it out and insert the left lens and wear that for the next 8 hours so I would get a total of 8 hours wearing time.
I continued alternating monocular vision at the start of my first year at university which was 4 months after first wearing the soft-perms but then still got the abrasions on my corneas due to excessive wear. I then went back to the CL clinic and tried piggyback lenses using my old RGPs which resulted in cloudy vision after an hour of wearing them. I then tried kerasoft lenses but could not correct my vision as the ghosting and multiple images caused too much distortion but were very comfortable. I was then given semi-limbal lenses, these are RGPs the size of a standard soft lens. The were a lot more comfortable than standard RGPs and did not move much when I blinked. However, after a few hours of wearing them my vision would become cloudy and the lens would dry out quickly. Refresher eye drops would not help much and having to keep taking them out and applying more conditioning solution every other hour was very annoying especially when a lecture lasted 3 hours. I then continued to wear the soft-perms as I did not have a problem with my vision getting cloudy.
After 6 months of wearing the soft-perms, when I first inserted the lenses they would be very painful for the 1st 2 hours but would feel fine after. My eyes would get red and very watery. This was getting worse so I could no longer cope in lectures. As a result I asked for a private corneal graft, but as I was already on the list for 6 months I was given a date for one on the NHS. I then intermitted my 1st year just before the exams, as I could not sit them in my current situation with the limited time I had to study and had my corneal graft on my left eye on the 29th of June this year. I will create a new topic for my recovery of my graft for others to read up on. My vision prior to the graft I could get 6/60 from either eye. I could just about get 3/60 from the right but not even that from the left. I was severely myopic in both eyes. If I was to view my computer screen without lenses it would have to be 2cm from my right eye and I could not even see it with my left. From my topography results at my pre-op check up my left cornea was a lot worse then when I was initially diagnosed with keratoconus, as there was a large colour distribution of red, pink and orange.
I have now just turned 20 and this has been my experience my experience of keratoconus over the past 3 years. There are a few causes of keratoconus. I do not believe that in my case it was genetic as no one in my family/generation has it or any other serious eye conditions other than myopia or hyperopia and is corrected by glasses. I feel that it was caused my extensively rubbing my eyes since childhood as I often had very irritated eyes. If I knew it could cause keratoconus I would have avoided it. I still rub my right eye sometimes as a force of habit.
Going through life and having to deal with keratoconus was difficult, although I did manage to cope with what had to be done. Being a teenager and being unable to do the things I could do before and not being able to do many other things others where other teenagers could was very frustrating and annoying at times. Even doing simple tasks like shaving or watching television clearly became difficult. As my sight became worse I could no longer see people’s faces clearly and they often thought that I was ignoring them but that wasn’t the case, I just couldn’t see who they were.
It is challenging having to deal with something like keratoconus. Every day may seem like a struggle but with time you will learn to deal with your problem so be patient. It was very annoying having to spend time in the morning and in the evening having to clean, insert and remove lenses but I eventually got used to it and took next to no time placing them in and removing them, although there will be some days when it might not be that easy. It will be irritating at times not being able to do some things you could before but you will find so many other things that you can now do. Do not seclude yourself and get disheartened, but try to come to terms with your condition and accept it. The sooner you are able to do that the easier your life will become and the more you will learn to appreciate other things that you previously may have taken for granted.
From what I had to deal with I really wanted to be able to help myself and others in the same and similar situations as myself, which is why I chose to study optometry. I will soon be continuing with my degree after I feel comfortable with my graft and am sincerely motivated to be able to do so.
I look forward to being able to exchange advice and comments with all of you on this helpful forum.....and sorry for the long post
Asif
