UK Keratoconus Self-Help and Support Association

Dear companion sufferers,

This is my first post, I thought who best would understand my joy other than you guys? The parent's of course know what I've been through and completely overjoyed,...other people can be "happy for me" but they don't understand truly.

Here goes.. This might be a long one ..

It all started when we got back from our summer holiday when I was 16. I had basic glasses that I used now and again but nothing serious. On our return my vision seemed awful so I tired to get an appointment with my local optician to sort this out before college started. The optician lady wouldn't check my vision because it hasn't been 2 years!!!!!!!!!!
In desperation I went to another optician told him what was going on, he checked my vision. He was absolutely shocked with how my previous optician had completely missed THIS....KC!
He wrote a letter to my GP for a swift hospital referral.
I did go back to my original optician lady and asked her,.. She said, "you was too young, I didn't want to scare you" that didn't even make sense!! I told her "you just turned me away.." she didn't have an answer for me, I was young myself back then and didn't take further action.

Once the hospital appointment started the struggle was REAL. By the time I was 18years old I had my driving test booked, I couldn't see past my KC I thought there's no way out, I'm going blind what's the point of driving so I didn't even go to my test. I had a place at university but I didn't go because I my vision was getting worse, the rigid plastic lenses probably did more damage then good at the time. I hated them with all my heart. I was in hospital every other week because my eyes were getting scratched, I had erosion or something that hurt so bad. My hospital doc was pushing me to have a graft I was far too scared I said no, decided to go private and see what's available.. Obviously they couldn't do much either I cried and my mum feeling helpless, it was a sad time.

I got a job, my employer was really understanding, helped a lot with additional equipment. I had so much time off work it was embarrassing lol but they always supported me, honestly best employer.

At 21 years old I had the graft in my left eye, it went really well, great vision. That's when life just changed for me. I surprised my dad with my DVLA licence! he was over the moon! I got married, life has moved on. I am grateful for everything.

Anyway moving on, that was exactly 11 years ago,.. Now I am 32 and yesterday I got a letter to collect my piggyback rigid contact lenses so I will be able to see from my right eye as I did when I was 16! I can't wait!
Thank you God.

God bless the person who's eye I have grafted in my eye,
And thank you for reading
All the best

Always good to read a positive story like this. Congrats on 11 years of good vision and long may it continue.

I was in a similar position to yourself, diagnosed at a similar age, I battled my way through university (although they did help me a lot I have to say) but have been avoiding surgery on the basis of everyone I see's recommendation due to other issues with my eyes.

My life was on pause for a considerable amount of time but I got married recently enough and now I've just had my first child. This was inconceivable at certain points over the past 20 years.

Brian-ire,
My surgery has helped me considerably, I didn't know at the time that the graft is expected to last between 15-20 maybe 25 years, I only learnt this last year that a rejection would mean I'd have to have another surgery which I am not keen on at all. This is it for me, I have decided not to have another surgery. I think the piggyback lens would give be a good enough vision to last me a while without the addition struggles of surgery.
Have a chat with your specialist doc and make an informed decision on what's right for you.

Congratulations on your baby. Its good to hear things are working out for you.

it's a new dawn it's a new day it's a new life..

Stay safe

Thank you both for showing that good times can eventually come after bad - something we all need to keep hold of in these strange times! And all the very best with your piggy back lenses. As for how long grafts last, it does depend on the type of graft. The newer partial (DALK) grafts are thought to have a longer life, because the back layer of the cornea (the endothelium) isn't removed. Even with the full thickness PK grafts, I know people with grafts that are 40 yrs plus and still going strong. And of course there are constant advances in surgery so who knows what new techniques there might be in 10 years time? Already it's possible to replace just the back layer if that fails.

Evergreenf1 wrote:Dear companion sufferers,

This is my first post, I thought who best would understand my joy other than you guys? The parent's of course know what I've been through and completely overjoyed,...other people can be "happy for me" but they don't understand truly.

Here goes.. This might be a long one ..

It all started when we got back from our summer holiday when I was 16. I had basic glasses that I used now and again but nothing serious. On our return my vision seemed awful so I tired to get an appointment with my local optician to sort this out before college started. The optician lady wouldn't check my vision because it hasn't been 2 years!!!!!!!!!!
In desperation I went to another optician told him what was going on, he checked my vision. He was absolutely shocked with how my previous optician had completely missed THIS....KC!
He wrote a letter to my GP for a swift hospital referral.
I did go back to my original optician lady and asked her,.. She said, "you was too young, I didn't want to scare you" that didn't even make sense!! I told her "you just turned me away.." she didn't have an answer for me, I was young myself back then and didn't take further action.

Once the hospital appointment started the struggle was REAL. By the time I was 18years old I had my driving test booked, I couldn't see past my KC I thought there's no way out, I'm going blind what's the point of driving so I didn't even go to my test. I had a place at university but I didn't go because I my vision was getting worse, the rigid plastic lenses probably did more damage then good at the time. I hated them with all my heart. I was in hospital every other week because my eyes were getting scratched, I had erosion or something that hurt so bad. My hospital doc was pushing me to have a graft I was far too scared I said no, decided to go private and see what's available.. Obviously they couldn't do much either I cried and my mum feeling helpless, it was a sad time.

I got a job, my employer was really understanding, helped a lot with additional equipment. I had so much time off work it was embarrassing lol but they always supported me, honestly best employer.

At 21 years old I had the graft in my left eye, it went really well, great vision. That's when life just changed for me. I surprised my dad with my DVLA licence! he was over the moon! I got married, life has moved on. I am grateful for everything.

Anyway moving on, that was exactly 11 years ago,.. Now I am 32 and yesterday I got a letter to collect my piggyback rigid contact lenses so I will be able to see from my right eye as I did when I was 16! I can't wait!
Thank you God.

God bless the person who's eye I have grafted in my eye,
And thank you for reading
All the best

That's great news